@Article{info:doi/10.2196/68233, author="Olimb Hillkirk, Anstein and Skavberg Roaldsen, Kirsti and Johnsen, Mari Hege", title="Physiotherapists' User Acceptance of a Lower Limb Robotic Exoskeleton in Specialized Rehabilitation: Qualitative Exploratory Study", journal="JMIR Rehabil Assist Technol", year="2025", month="Apr", day="16", volume="12", pages="e68233", keywords="assistive technology", keywords="clinical implementation", keywords="deductive analysis", keywords="robot-assisted gait training therapy", keywords="RAGT", keywords="user experiences", keywords="unified theory of acceptance and use of technology", keywords="UTAUT", keywords="rehabilitation", abstract="Background: Robotic lower limb exoskeletons have emerged as promising tools in the clinical rehabilitation of patients with lower limb paralysis due to neurological disease, stroke, or spinal cord injury. Identified benefits in gait function rehabilitation include improved gait function, cardiovascular effects, enhanced training quality, patient motivation, and reduced physical and psychological workload for therapists. Despite the identified benefits, the successful adoption of this technology largely depends on therapists' user acceptance. Objective: This study aims to explore physiotherapists' perceptions of using robot-assisted lower-limb gait training in specialized neurological rehabilitation using the unified theory of acceptance and use of technology framework. Methods: A qualitative, exploratory research design with a deductive approach was used. Semistructured interviews were conducted with 7 expert physiotherapists in a Norwegian specialized rehabilitation hospital. Data collection and analysis were guided by the unified theory of acceptance and use of technology framework. Results: The physiotherapists' use of lower limb exoskeletons was greatly influenced by perceived benefits for patients or challenges, such as usability issues, the time required for adjustment to each patient, and the lack of personnel resources to facilitate their use. Thus, perceived usefulness and facilitating conditions (or lack thereof) had a great influence on the physiotherapists' intentions to use and the actual use of the exoskeleton. Conclusions: This study identified several factors influencing the physiotherapists' acceptance and integration of the lower limb exoskeleton. Available resources, such as time and personnel, were emphasized as important factors to increase the use of the exoskeleton in specialized rehabilitation. Our findings may inform service providers and engineers in specialized neurological rehabilitation settings. ", doi="10.2196/68233", url="https://rehab.jmir.org/2025/1/e68233", url="http://www.ncbi.nlm.nih.gov/pubmed/40238235" } @Article{info:doi/10.2196/72037, author="Pessoa, Cheila", title="Enhancing Self-Management Support Apps for Spinal Cord Injury: The Missing Role of Caregivers", journal="JMIR Mhealth Uhealth", year="2025", month="Apr", day="14", volume="13", pages="e72037", keywords="mobile phone", keywords="mHealth", keywords="eHealth", keywords="telemedicine", keywords="telehealth", keywords="spinal cord injury", keywords="self-management", keywords="internet-based intervention", keywords="World Wide Web", keywords="systematic review", keywords="caregiver", doi="10.2196/72037", url="https://mhealth.jmir.org/2025/1/e72037" } @Article{info:doi/10.2196/59032, author="Rujeedawa, Tanzil and Karimi, Zahabiya and Wood, Helen and Sangeorzan, Irina and Smith, Roy and Sadler, Iwan and Martin-Moore, Esther and Gardner, Adrian and K Demetriades, Andreas and Sinha, Rohitashwa and Grahovac, Gordan and Bateman, Antony and Deakin, Naomi and Davies, Benjamin", title="Evaluation of Financial Support Workshops for Patients Under State Pension Age With Degenerative Cervical Myelopathy: Survey Study", journal="JMIR Form Res", year="2025", month="Feb", day="24", volume="9", pages="e59032", keywords="myelopathy", keywords="degenerative", keywords="spine", keywords="spinal", keywords="benefits", keywords="aid", keywords="financial", keywords="money", keywords="income", keywords="poverty", keywords="disability", keywords="disabled", keywords="finance", keywords="workshop", keywords="education", keywords="service", keywords="access", keywords="accessibility", keywords="navigate", keywords="confidence", keywords="government", abstract="Background: Degenerative cervical myelopathy (DCM), a form of slow-motion and progressive spinal cord injury caused by spinal cord compression secondary to degenerative pathology, leads to high levels of disability and dependence, and may reduce quality of life. Myelopathy.org is the first global scientific and clinical charity for DCM, providing an accessible platform freely disseminating information relevant to the DCM diagnosis and its treatment. Significant transient and long-term change to earnings do occur and can thrust individuals into poverty. People with DCM face many challenges accessing state financial assistance. This can have a cumulative negative financial effect due to the association between DCM and low socioeconomic index. Financial support available to patients under pension age include Universal Credit (UC), a payment that helps with living costs, and Personal Independence Payment (PIP), which helps with extra living costs if someone has both a long-term health condition or disability and difficulty doing certain everyday tasks. Objective: This study aimed to assess if delivering workshops centered around access to financial support could assist people with DCM living in the United Kingdom. Methods: A series of 2 internet-based workshops was targeted at accessing financial support for English patients under the state pension age, with an anonymized survey delivered to participants after each session. The first session was on UC and the second on PIP. The survey consisted of a mixture of Likert scales, free text and yes or no answers. Survey responses were analyzed using descriptive statistics and free text answers underwent inductive thematic analysis. Results: The average rating on the use of UC was 9.00/10. Presession self-rated confidence levels were 5.11/10 rising to 8.00/10. The mean score of wanting further similar sessions was 8.67/10 with 56\% (5/9) of participants wanting one-to-one sessions. For PIP, the average session use rating was 10/10. Presession self-rated confidence levels were 4.43/10 rising to 9.57/10. The mean score of wanting further similar sessions was 8.71/10, with 43\% (3/7) of participants wanting one-to-one sessions . Following inductive thematic analysis, themes regarding the usefulness of such sessions and the challenges to accessing financial support emerged. One participant gave negative feedback, which included the length of the session and perceived problems around confidentiality and data protection. Conclusions: The pilot series was largely perceived as a success, with participants finding them useful and increasing their self-rated confidence in navigating the UK financial support system. Given the small sample size, it is hard to predict the success of future sessions. Finally, given that the hurdles in accessing financial support extend beyond DCM, such workshops may be relevant to other organizations. ", doi="10.2196/59032", url="https://formative.jmir.org/2025/1/e59032" } @Article{info:doi/10.2196/64825, author="Mastropietro, Alfonso and Peruzzo, Denis and Taccogna, Giovanna Maria and Sanna, Nicole and Casali, Nicola and Nossa, Roberta and Biffi, Emilia and Ambrosini, Emilia and Pedrocchi, Alessandra and Rizzo, Giovanna", title="Multiparametric MRI Assessment of Morpho-Functional Muscle Changes Following a 6-Month FES-Cycling Training Program: Pilot Study in People With a Complete Spinal Cord Injury", journal="JMIR Rehabil Assist Technol", year="2025", month="Jan", day="16", volume="12", pages="e64825", keywords="functional electrical stimulation", keywords="FES", keywords="cycling", keywords="exercise", keywords="physical activity", keywords="spinal cord injury", keywords="multiparametric MRI", keywords="skeletal muscle", keywords="rehabilitation", keywords="magnetic resonance imaging", keywords="muscle", keywords="muscular", keywords="musculoskeletal", keywords="spine", keywords="MRI", keywords="mpMRI", keywords="image", keywords="imaging", abstract="Background: Spinal cord injuries (SCIs) cause debilitating secondary conditions such as severe muscle deterioration, cardiovascular, and metabolic dysfunctions, significantly impacting patients' quality of life. Functional electrical stimulation (FES) combined with cycling exercise (FES-cycling) has shown promise in improving muscle function and health in individuals with SCI. Objective: This pilot study aimed to investigate the potential role of multiparametric magnetic resonance imaging (MRI) to assess muscle health during and after an FES-cycling rehabilitation program. Methods: Four male participants with chronic SCI underwent a 6-month FES-cycling training program, consisting of two 30-minute sessions per week. MRI scans were performed at baseline (T0), after 3 months (T1), at the end of the training (T2), and 1-month posttraining (T3). The MRI protocol included T1-weighted imaging for volume quantification, Dixon imaging for fat fraction, multi-echo spin echo for T2 relaxation times, and diffusion tensor imaging to assess diffusion parameters. Results: Muscle hypertrophy was observed, with an average increase in muscle volume of 22.3\% at T1 and 36.7\% at T2 compared with baseline. One month posttraining, muscle volume remained 23.2\% higher than baseline. Fat fraction decreased from 11.1\% at T0 to 9.1\% at T2, with a rebound to 10.9\% at T3. T2 relaxation times showed a reduction even though this was not consistent among participants. Diffusion tensor imaging parameters revealed subtle changes in muscle tissue microstructure, with a decrease in fractional anisotropy mainly associated to an increase of radial diffusivity. Conclusions: Although preliminary, this study provides evidence that 6 months of low-intensity FES-bike training can increase muscle volume and decrease fat infiltration in individuals with SCI. The study demonstrates that the use of a multiparametric MRI provides comprehensive insights into both macroscopic and microscopic changes within muscle tissues, supporting its integration into clinical practice for assessing the efficacy of rehabilitation interventions. Trial Registration: ClinicalTrials.gov NCT06321172; https://clinicaltrials.gov/study/NCT06321172 ", doi="10.2196/64825", url="https://rehab.jmir.org/2025/1/e64825" } @Article{info:doi/10.2196/53677, author="Bernard, M. Renaldo and Seijas, Vanessa and Davis, Micheal and Volkova, Anel and Diviani, Nicola and L{\"u}scher, Janina and Sabariego, Carla", title="Self-Management Support Apps for Spinal Cord Injury: Results of a Systematic Search in App Stores and Mobile App Rating Scale Evaluation", journal="JMIR Mhealth Uhealth", year="2024", month="Dec", day="19", volume="12", pages="e53677", keywords="mobile phone", keywords="mobile health", keywords="mHealth", keywords="eHealth", keywords="telemedicine", keywords="telehealth", keywords="spinal cord injury", keywords="self-management", keywords="internet-based intervention", keywords="world wide web", keywords="systematic review", keywords="review", abstract="Background: The use of mobile technology to meet health needs, widely referred to as mobile health (mHealth), has played a critical role in providing self-management support for chronic health conditions. However, despite its potential benefits, mHealth technologies such as self-management support apps for spinal cord injury (SCI) have received little research attention, and an understanding of their public availability is lacking. Therefore, an overview of these apps is needed to complement findings from the literature for a complete understanding of mHealth self-management support tools for SCI to support the selection and improvement of existing apps and the development of new ones. Objective: This study aimed to identify and describe quantity, quality, focus, strengths, and weaknesses of self-management support apps for SCI available on major mobile app digital distribution platforms. Methods: A systematic search of the Google Play Store and Apple App Store was conducted to identify and summarize apps for SCI that have been updated since 2017. A supplementary systematic literature review was conducted across 11 bibliographic databases to identify publications that provided more detailed descriptions of the identified apps than what is typically available in app stores. The data synthesis was guided by self-management tasks and skills taxonomies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines informed the reporting. Results: The 13 apps included in the final synthesis were launched between 2013 and 2021, mostly originating in the United States, with availability in 72 countries and support for 14 languages. Most apps used the Android operating system (10/13, 77\%), while 31\% (4/13) used iOS. The identified apps mainly focused on activities of daily living, physical activity promotion, health literacy, and therapeutic exercise. All 3 self-management tasks (medical, role, and emotional management) and most self-management skills and support activities were supported by the apps. The mean Mobile App Rating Scale score was 3.86 (SD 0.54), indicating good overall quality. No publications were found describing these apps. Conclusions: Despite their good overall quality, as measured by the Mobile App Rating Scale assessment, the 13 identified apps, alone or combined, do not appear to offer a comprehensive self-management approach that incorporates theory-based strategies. Besides working to improve comprehensiveness, future research and practice should consider adopting new technologies, such as artificial intelligence, to enhance future self-management support apps for SCI. Furthermore, adopting new app development methods, such as low-code development platforms, could help reduce barriers to development, such as time, cost, and securing scarce expertise. ", doi="10.2196/53677", url="https://mhealth.jmir.org/2024/1/e53677" } @Article{info:doi/10.2196/57699, author="Carey, L. Rachel and Le, Ha and Coffman, L. Donna and Nahum-Shani, Inbal and Thirumalai, Mohanraj and Hagen, Cole and Baehr, A. Laura and Schmidt-Read, Mary and Lamboy, R. Marlyn S. and Kolakowsky-Hayner, A. Stephanie and Marino, J. Ralph and Intille, S. Stephen and Hiremath, V. Shivayogi", title="mHealth-Based Just-in-Time Adaptive Intervention to Improve the Physical Activity Levels of Individuals With Spinal Cord Injury: Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2024", month="Jun", day="28", volume="13", pages="e57699", keywords="spinal cord injury", keywords="physical activity", keywords="just-in-time adaptive intervention", keywords="mobile health", keywords="randomized controlled trial", keywords="microrandomized trial", keywords="wearable sensors", keywords="ecological momentary assessment", keywords="community", keywords="mobile phone", abstract="Background: The lack of regular physical activity (PA) in individuals with spinal cord injury (SCI) in the United States is an ongoing health crisis. Regular PA and exercise-based interventions have been linked with improved outcomes and healthier lifestyles among those with SCI. Providing people with an accurate estimate of their everyday PA level can promote PA. Furthermore, PA tracking can be combined with mobile health technology such as smartphones and smartwatches to provide a just-in-time adaptive intervention (JITAI) for individuals with SCI as they go about everyday life. A JITAI can prompt an individual to set a PA goal or provide feedback about their PA levels. Objective: The primary aim of this study is to investigate whether minutes of moderate-intensity PA among individuals with SCI can be increased by integrating a JITAI with a web-based PA intervention (WI) program. The WI program is a 14-week web-based PA program widely recommended for individuals with disabilities. A secondary aim is to investigate the benefit of a JITAI on proximal PA, defined as minutes of moderate-intensity PA within 120 minutes of a PA feedback prompt. Methods: Individuals with SCI (N=196) will be randomized to a WI arm or a WI+JITAI arm. Within the WI+JITAI arm, a microrandomized trial will be used to randomize participants several times a day to different tailored feedback and PA recommendations. Participants will take part in the 24-week study from their home environment in the community. The study has three phases: (1) baseline, (2) WI program with or without JITAI, and (3) PA sustainability. Participants will provide survey-based information at the initial meeting and at the end of weeks 2, 8, 16, and 24. Participants will be asked to wear a smartwatch every day for ?12 hours for the duration of the study. Results: Recruitment and enrollment began in May 2023. Data analysis is expected to be completed within 6 months of finishing participant data collection. Conclusions: The JITAI has the potential to achieve long-term PA performance by delivering tailored, just-in-time feedback based on the person's actual PA behavior rather than a generic PA recommendation. New insights from this study may guide intervention designers to develop engaging PA interventions for individuals with disability. Trial Registration: ClinicalTrials.gov NCT05317832; https://clinicaltrials.gov/study/NCT05317832 International Registered Report Identifier (IRRID): DERR1-10.2196/57699 ", doi="10.2196/57699", url="https://www.researchprotocols.org/2024/1/e57699", url="http://www.ncbi.nlm.nih.gov/pubmed/38941145" } @Article{info:doi/10.2196/56081, author="Ong, Winslet and Omar, Arfa Noor and Zanudin, Asfarina and Alias, Faiz Muhamad and Hui Wen, Lim and Thang Xue Ee, Angel and Mohd Nordin, Azlin Nor and Manaf, Haidzir and Husin, Basri and Ahmad, Mahadir and Hisham, Hafifi", title="The Relationship Between Physical Activity and Mental Health Among Individuals With Spinal Cord Injury: Protocol for a Scoping Review", journal="JMIR Res Protoc", year="2024", month="Jun", day="12", volume="13", pages="e56081", keywords="access barriers", keywords="depression", keywords="disability", keywords="exercise interventions", keywords="mental health", keywords="mobility limitations", keywords="physical activity", keywords="psychological outcomes", keywords="quality of life", keywords="spinal cord injury", keywords="SCI", keywords="mobility", keywords="scoping review", keywords="exercise", keywords="effectiveness", keywords="well-being", keywords="impairments", keywords="physical function", keywords="prevalence", abstract="Background: Spinal cord injury (SCI) is a devastating condition that often leads to significant impairments in physical function, leading to disability and mental health disorders. Hence, understanding the prevalence of SCI and the relationship between physical activity and mental health in individuals with SCI is crucial for informing rehabilitation strategies and optimizing outcomes. Objective: This study aims to comprehensively analyze existing research on the link between physical activity and mental health and identify the level of physical activity and mental health status, the barriers to physical activity, and SCI's impacts on psychological well-being in individuals with SCI. Methods: An electronic search strategy will be used to identify prevalence studies published since 1993 in health-related databases such as PubMed, MEDLINE, COCHRANE Library, and Wiley Library using the following query: ``Spinal Cord Injury'' OR ``Paraplegia'' OR ``Tetraplegia'' AND ``Physical Activity'' OR ``Exercise'' AND ``Mental Health'' OR ``Mental Illness'' OR ``Mental Disorder.'' Bibliographies of primary studies and review articles meeting the inclusion criteria will be searched manually to identify further eligible studies. The risk of bias in the included studies will be appraised using the Joanna Briggs Institute checklist for prevalence studies by 2 review authors. Any disagreement will be resolved by reaching a consensus. Results: Funding was received in October 2023, data collection will commence in July 2024, and the results are expected by 2025. We will summarize the selection of the eligible studies using a flowchart. The data from the studies will be extracted and tabulated. This scoping review will be published in a peer-reviewed journal in accordance with PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. Conclusions: This scoping review underscores the complex relationship between physical activity and mental health among individuals with SCI, highlighting the level of physical activity and mental health status, barriers to physical activity engagement, and psychological implications. Understanding these dynamics is crucial in devising tailored interventions aimed at enhancing mental well-being. This synthesis of evidence emphasizes the need for personalized strategies to promote physical activity, addressing unique challenges faced by this population to foster improved mental health outcomes and overall quality of life. Trial Registration: Open Science Framework osf.io/ugx7d; https://osf.io/ugx7d/ International Registered Report Identifier (IRRID): PRR1-10.2196/56081 ", doi="10.2196/56081", url="https://www.researchprotocols.org/2024/1/e56081", url="http://www.ncbi.nlm.nih.gov/pubmed/38865699" } @Article{info:doi/10.2196/52726, author="Berrigan, T. Margaret and Beaulieu-Jones, R. Brendin and Baines, Rachel and Berkowitz, Seth and Evans, Heather and Brat, A. Gabriel", title="Barriers to Postdischarge Smartphone App Use Among Patients With Traumatic Rib Fractures", journal="JMIR Form Res", year="2024", month="May", day="31", volume="8", pages="e52726", keywords="mobile health", keywords="smartphone app", keywords="electronic health record", keywords="postdischarge monitoring", keywords="implementation science", keywords="mHealth", keywords="app", keywords="apps", keywords="application", keywords="applications", keywords="digital health", keywords="smartphone", keywords="smartphones", keywords="mobile phone", doi="10.2196/52726", url="https://formative.jmir.org/2024/1/e52726", url="http://www.ncbi.nlm.nih.gov/pubmed/38820574" } @Article{info:doi/10.2196/51849, author="Morrow, M. Melissa and Hughes, C. Lynne and Collins, M. Diane and Vos-Draper, L. Tamara", title="Clinical Remote Monitoring of Individuals With Spinal Cord Injury at Risk for Pressure Injury Recurrence Using mHealth: Protocol for a Pilot, Pragmatic, Hybrid Implementation Trial", journal="JMIR Res Protoc", year="2024", month="Apr", day="10", volume="13", pages="e51849", keywords="wheelchair user", keywords="seating and mobility", keywords="weight shift behavior", keywords="pressure injury", keywords="mobile phone", abstract="Background: Pressure injuries are one of the most challenging secondary conditions for individuals with spinal cord injuries and related disorders (SCI/D) owing to inherent, lifelong risk factors that include a lack of sensory and motor function below the level of injury and reliance on a wheelchair for daily mobility, resulting in prolonged periods of sitting. Although many factors contribute to the development of pressure injuries, the pressure between the skin and a surface is always a factor and the development of injury is dependent on the magnitude and duration of the pressure. Clinically, broad recommendations for relieving pressure are used because we know very little about the unique day-to-day life patterns of the individual wheelchair user. Typically, it is after the occurrence of a pressure injury that the therapist will check equipment fit and the effectiveness of pressure offloading and ask about other surfaces they sit on in their home and community. This time-lapsed, largely self-reported data are fraught with recall bias and inaccuracies that the therapist incorporates into a plan of care. Objective: This study's objective is to pilot-test the implementation and clinical effectiveness of a telehealth model of care combined with our mobile health (mHealth) Assisted Weight-Shift device for remote monitoring of factors related to maintaining skin health and wheelchair setup. Our overall hypothesis is that this study will result in an effective implementation plan, and the enhanced connected model of care using remote monitoring of pressure management will result in pilot-level, improved clinical outcomes for adults with spinal cord injury at high risk for pressure injury recurrence. Methods: For all aims, we will use a mixed methods design using an exploratory, sequential approach to include the strengths of both qualitative and quantitative data. For aims 1 and 2, we will iteratively collect qualitative data from therapists, patients with SCI/D, and other stakeholders. For aim 3, we will perform a hybrid effectiveness-implementation randomized controlled trial to pilot-test the intervention. The projected results include an iteratively developed and tested implementation plan that meets moderate to high levels of acceptability, feasibility, and appropriateness. Additionally, the pilot trial results are expected to show positive trends in relevant clinical outcomes related to reduced pressure injury incidence, recurrence, and improved healing when compared with the standard of care. Results: Currently, 6 participants have been recruited for our aim-1 qualitative study. Conclusions: This study will expand upon our previous study to move the Assisted Weight-Shift system into routine clinical care, which was a strong desire of adults with SCI/D for improved individualized care plans to prevent pressure injuries. The results of this study will guide the next steps in a full, hybrid effectiveness-implementation trial with the goal of improving care to prevent pressure injuries. International Registered Report Identifier (IRRID): DERR1-10.2196/51849 ", doi="10.2196/51849", url="https://www.researchprotocols.org/2024/1/e51849", url="http://www.ncbi.nlm.nih.gov/pubmed/38598267" } @Article{info:doi/10.2196/53084, author="Bass, Alec and Morin, N. Suzanne and Guidea, Michael and Lam, T. Jacqueline T. A. and Karelis, D. Antony and Aubertin-Leheudre, Myl{\`e}ne and Gagnon, H. Dany and ", title="Potential Effects of an Exoskeleton-Assisted Overground Walking Program for Individuals With Spinal Cord Injury Who Uses a Wheelchair on Imaging and Serum Markers of Bone Strength: Pre-Post Study", journal="JMIR Rehabil Assist Technol", year="2024", month="Jan", day="1", volume="11", pages="e53084", keywords="assistive technology", keywords="bone architecture", keywords="bone turnover", keywords="osteoporosis", keywords="rehabilitation", keywords="spinal cord injuries", keywords="SCI", keywords="spinal cord injury", keywords="assistive device", keywords="wheelchair", keywords="exoskeleton device", keywords="locomotion", keywords="bone strength", keywords="risk", keywords="fracture", abstract="Background: As many as 60\% of individuals use a wheelchair long term after a spinal cord injury (SCI). This mode of locomotion leads to chronic decline in lower-extremity weight-bearing activities and contributes to the development of severe sublesional osteoporosis and high rates of fragility fracture. Overground exoskeleton-assisted walking programs provide a novel opportunity to increase lower-extremity weight bearing, with the potential to improve bone health. Objective: The aim of the study is to measure the potential effects of an exoskeleton-assisted walking program on lower-extremity bone strength and bone remodeling biomarkers in individuals with chronic (?18 months) SCI who use a wheelchair. Methods: In total, 10 participants completed a 16-week exoskeleton-assisted walking program (34 individualized 1-hour sessions, progressing from 1 to 3 per week). Bone mineral density and bone strength markers (dual-energy x-ray absorptiometry: total body, left arm, leg, total hip, and femoral neck and peripheral quantitative computed tomography: 25\% of left femur and 66\% of left tibia) as well as bone remodeling biomarkers (formation=osteocalcin and resorption=C-telopeptide) were measured before and after intervention and compared using nonparametric tests. Changes were considered significant and meaningful if the following criteria were met: P<0.1, effect size ?0.5, and relative variation >5\%. Results: Significant and meaningful increases were observed at the femur (femoral neck bone mineral content, bone strength index, and stress-strain index) and tibia (cortical cross-sectional area and polar moment of inertia) after the intervention (all P<.10). We also noted a decrease in estimated femoral cortical thickness. However, no changes in bone remodeling biomarkers were found. Conclusions: These initial results suggest promising improvements in bone strength markers after a 16-week exoskeleton-assisted walking program in individuals with chronic SCI. Additional research with larger sample sizes, longer interventions (possibly of greater loading intensity), and combined modalities (eg, pharmacotherapy or functional electrical stimulation) are warranted to strengthen current evidence. Trial Registration: ClinicalTrials.gov NCT03989752; https://clinicaltrials.gov/ct2/show/NCT03989752 International Registered Report Identifier (IRRID): RR2-10.2196/19251 ", doi="10.2196/53084", url="https://rehab.jmir.org/2024/1/e53084", url="http://www.ncbi.nlm.nih.gov/pubmed/38163294" } @Article{info:doi/10.2196/49813, author="Vos-Draper, L. Tamara and Morrow, B. Melissa M. and Ferguson, E. John and Mathiowetz, G. Virgil", title="Effects of Real-Time Pressure Map Feedback on Confidence in Pressure Management in Wheelchair Users With Spinal Cord Injury: Pilot Intervention Study", journal="JMIR Rehabil Assist Technol", year="2023", month="Oct", day="12", volume="10", pages="e49813", keywords="spinal cord injury", keywords="wheelchair", keywords="pressure injury prevention", keywords="self-efficacy", keywords="pressure mapping", keywords="pressure", keywords="mapping", keywords="map", keywords="interface", keywords="spine", keywords="spinal cord", keywords="feedback", keywords="real time", keywords="mobile phone", abstract="Background: Wheelchair users with a spinal cord injury (SCI) are at a high risk for developing pressure injuries (PIs). Performing weight shifts is a primary method of pressure management for PI prevention; however, individuals with SCI may lack confidence in their abilities to perform adequate pressure relief due to their lack of sensation. Real-time seat interface pressure mapping feedback may provide partial substitution for sensory feedback such that an individual's confidence is improved. Objective: We aim to examine how confidence for pressure management by wheelchair users with SCI was impacted by providing access to real-time, on-demand seat interface pressure mapping feedback. Methods: Adults with SCI (N=23) completed self-efficacy questions addressing confidence around 4 factors related to performing weight shifts in this longitudinal, repeated-measures study. We evaluated the impact of providing standard PI prevention education and access to live pressure map feedback on confidence levels for performing weight shifts. Results: Access to live pressure map feedback while learning how to perform weight shifts resulted in significantly higher confidence about moving far enough to relieve pressure at high-risk areas. Confidence for adhering to the recommended weight shift frequency and duration was not significantly impacted by in-clinic education or use of pressure map feedback. Confidence that performing weight shifts reduces PI risk increased most following education, with slight additional increase when pressure map feedback was added. Conclusions: Access to live pressure mapping feedback improves confidence about performing weight shifts that relieve pressure when provided in the clinical setting and demonstrates potential for the same in the home. This preliminary exploration of a smartphone-based pressure mapping intervention highlights the value of access to continuous pressure mapping feedback to improve awareness and confidence for managing pressure. Trial Registration: ClinicalTrials.gov NCT03987243; https://clinicaltrials.gov/study/NCT03987243 ", doi="10.2196/49813", url="https://rehab.jmir.org/2023/1/e49813", url="http://www.ncbi.nlm.nih.gov/pubmed/37824188" } @Article{info:doi/10.2196/48321, author="Yordanov, Stefan and Yang, Xiaoyu and Mowforth, Oliver and K Demetriades, Andreas and Ivanov, Marcel and Vergara, Pierluigi and Gardner, Adrian and Pereira, Erlick and Bateman, Antony and Alamri, Alexander and Francis, Jibin and Trivedi, Rikin and Kotter, Mark and Davies, Benjamin and Budu, Alexandru and ", title="Factors Influencing Surgical Decision-Making in the Posterior Laminectomy With Fixation for Degenerative Cervical Myelopathy (POLYFIX-DCM) Trial: Survey Study", journal="JMIR Form Res", year="2023", month="Sep", day="12", volume="7", pages="e48321", keywords="cervical myelopathy", keywords="spondylosis", keywords="spondylotic stenosis", keywords="disc herniation", keywords="ossification posterior longitudinal ligament", keywords="degeneration", keywords="disability", keywords="recovery", keywords="questionnaire", keywords="decision-making", keywords="surgeons", keywords="myelopathy", keywords="stress", keywords="spinal cord", keywords="surgery", keywords="decompression", keywords="laminectomy", abstract="Background: Degenerative cervical myelopathy (DCM) is estimated to affect 2\% of the adult population. DCM occurs when degenerative processes cause compression and injure the spinal cord. Surgery to remove the stress caused by the compression of the spinal cord is the mainstay of treatment, with a range of techniques in use. Although various factors are described to inform the selection of these techniques, there needs to be more consensus and limited comparative evidence. Objective: The main objective of this survey was to explore the variation of practice and decision-making, with a focus on laminectomy versus laminectomy and fusion in posterior surgery of the cervical spine. We present the results of a survey conducted among the principal investigators (PIs) of the National Institute for Health and Care Research (NIHR) randomized controlled trial on posterior laminectomy with fixation for degenerative cervical myelopathy (POLYFIX-DCM). Methods: A series of 7 cases were shared with 24 PIs using SurveyMonkey. Each case consisted of a midsagittal T2-weighted magnetic resonance imaging and lateral cervical x-rays in flexion and extension. Surgeons were asked if their preferred approach was anterior or posterior. If posterior, they were asked whether they preferred to instrument and whether they had the equipoise to randomize in the NIHR POLYFIX-DCM trial. Variability in decision-making was then explored using factors reported to inform decision-making, such as alignment, location of compression, number of levels operated, presence of mobile spondylolisthesis, and patient age. Results: The majority of PIs (16/30, 53\%) completed the survey. Overall, PIs favored a posterior approach (12/16, 75\%) with instrumentation (75/112, average 66\%) and would randomize (67/112, average 62\%) most cases. Factors reported to inform decision-making poorly explained variability in responses in both univariate testing and with a multivariate model (R2=0.1). Only surgeon experience of more than 5 years and orthopedic specialty training background were significant predictors, both associated with an anterior approach (odds ratio [OR] 1.255; P=.02 and OR 1.344; P=.007, respectively) and fusion for posterior procedures (OR 0.628; P<.001 and OR 1.344; P<.001, respectively). Surgeon experience also significantly affected the openness to randomize, with those with more than 5 years of experience less likely to randomize (OR --0.68; P<.001). Conclusions: In this representative sample of spine surgeons participating in the POLYFIX-DCM trial as investigators, there is no consensus on surgical strategy, including the role of instrumented fusion following posterior decompression. Overall, this study supports the view that there appears to be a clinical equipoise, and conceptually, a randomized controlled trial appears feasible, which sets the scene for the NIHR POLYFIX-DCM trial. ", doi="10.2196/48321", url="https://formative.jmir.org/2023/1/e48321", url="http://www.ncbi.nlm.nih.gov/pubmed/37698903" } @Article{info:doi/10.2196/46217, author="G{\"u}nther, Florian and Schober, Fabian and Hunger, Sandra and Schellnock, Julia and Derlien, Steffen and Schleifenbaum, Stefan and Drossel, Welf-Guntram and Heyde, Christoph-Eckhard", title="Improving Home-Based Scoliosis Therapy: Findings From a Web-Based Survey", journal="JMIR Rehabil Assist Technol", year="2023", month="Aug", day="4", volume="10", pages="e46217", keywords="scoliosis therapy", keywords="Schroth therapy", keywords="home-based exercise", keywords="home program", keywords="physiotherapeutic scoliosis-specific exercises (PSSE)", keywords="adherence", keywords="assistive devices", keywords="exercise system", keywords="digital tools", keywords="eHealth", abstract="Background: Conservative scoliosis therapy in the form of assisted physiotherapeutic scoliosis exercises is supplemented by self-contained training at home, depending on the approach (eg, Schroth, the Scientific Exercises Approach to Scoliosis). Complex exercises, lack of awareness of the importance of training, and missing supervision by therapists often lead to uncertainty and reduced motivation, which in turn reduces the success of home-based therapy. Increasing digitalization in the health care sector offers opportunities to close this gap. However, research is needed to analyze the requirements and translate the potential of digital tools into concrete solution concepts. Objective: The aim of this study is to evaluate the potential for optimizing home-based scoliosis therapy in terms of motivation, assistive devices, and digital tools. Methods: In collaboration with the Institute of Physiotherapy at the Jena University Hospital, a survey was initiated to address patients with scoliosis and physical therapists. A digital questionnaire was created for each target group and distributed via physiotherapies, scoliosis forums, the Bundesverband f{\"u}r Skoliose Selbsthilfe e. V. newsletter via a link, and a quick response code. The survey collected data on demographics, therapy, exercise habits, motivation, assistive devices, and digital tools. Descriptive statistics were used for evaluation. Results: Of 141 survey participants, 72 (51.1\%; n=62, 86.1\%, female; n=10, 13.9\%, male) patients with scoliosis with an average age of 40 (SD 17.08) years and 30 scoliosis therapists completed the respective questionnaires. The analysis of home-based therapy showed that patients with scoliosis exercise less per week (2 times or less; 45/72, 62.5\%) than they are recommended to do by therapists (at least 3 times; 53/72, 73.6\%). Patients indicated that their motivation could be increased by practicing together with friends and acquaintances (54/72, 75\%), a supporting therapy device (48/72, 66.7\%), or a digital profile (46/72, 63.9\%). The most important assistive devices, which are comparatively rarely used in home-based therapy, included balance boards (20/72, 27.8\%), wall bars (23/72, 31.9\%), mirrors (36/72, 50\%), and long bars (40/72, 55.6\%). Therapists saw the greatest benefit of digital tools for scoliosis therapy in increasing motivation (26/30, 87\%), improving home therapy (25/30, 83\%), monitoring therapy progress (25/30, 83\%), and demonstrating exercise instructions (24/30, 80\%). Conclusions: In this study, we investigated whether there is any potential for improvement in home-based scoliosis therapy. For this purpose, using online questionnaires, we asked patients with scoliosis and therapists questions about the following topics: exercise habits, outpatient and home-based therapy, motivation, supportive devices, and digital tools. The results showed that a lack of motivation, suitable training equipment, and tools for self-control leads to a low training workload. From the perspective of the patients surveyed, this problem can be addressed through community training with friends or acquaintances, a supportive therapy device, and digital elements, such as apps, with training instructions and user profiles. ", doi="10.2196/46217", url="https://rehab.jmir.org/2023/1/e46217", url="http://www.ncbi.nlm.nih.gov/pubmed/37540557" } @Article{info:doi/10.2196/47665, author="Wilroy, Jereme and Kim, Yumi and Lai, Byron and Young, Hui-Ju and Giannone, John and Powell, Danielle and Thirumalai, Mohanraj and Mehta, Tapan and Rimmer, James", title="Increasing Physical Activity in Persons With Spinal Cord Injury With an eHealth-Based Adaptive Exercise Intervention: Protocol for a Sequential Multiple Assignment Randomized Trial", journal="JMIR Res Protoc", year="2023", month="Jul", day="27", volume="12", pages="e47665", keywords="exercise", keywords="physical activity", keywords="spinal cord injury", keywords="adaptive intervention", abstract="Background: Participating in an adequate amount of physical activity to acquire health benefits is challenging for people with spinal cord injury (SCI) due to personal and logistic barriers. Barriers in the built and social environments may include lack of transportation, lack of accessible facilities or programs, and lack of training among fitness personnel. Low self-efficacy, lack of self-regulation skills, and improper outcome expectations are examples of personal barriers. Current approaches to investigating physical activity programs in people with SCI have been limited to traditional ``one-size-fits-all'' design, which has yielded low adherence rates, high dropout rates, and participants not maintaining physical activity levels at follow-up. Objective: The primary aim of this study is to test the feasibility of a tele-exercise program that applies an adaptive intervention design for 30 adults with SCI, targeting increases in adherence to the exercise program and physical activity participation. Methods: The Sequential Multiple Assignment Randomized Trial for Home-based Exercise and Lifestyle Tele-Health (SMART-HEALTH) is a 12-week, home-based, movement-to-music (M2M) program. The goal of a SMART-designed study is to develop an adaptive intervention that modifies support provisions based on response levels. In SMART-HEALTH, 2 groups of participants will undergo 3-week and 6-week asynchronous M2M interventions in the first phase. Participants who did not achieve the desired adherence rate (?95\% of video watch minutes) will be rerandomized into M2M Live (switch) or individualized behavioral coaching (augmented with the asynchronous M2M program). The study will primarily assess rates of recruitment or enrollment, adherence and retention, timing to identify nonresponders, and scientific outcomes (eg, physical activity and exercise self-efficacy). The study will qualitatively evaluate the acceptability of the study using semistructured interviews among participants who complete the 12-week intervention. Results: Recruitment procedures started in June 2022. All data are expected to be collected by September 2023. Full trial results are expected to be published by March 2024. Secondary analyses of data will be subsequently published. Results will include exercise adherence rates; changes in self-reported physical activity levels and blood pressure; and changes in secondary conditions including pain, sleep, and fatigue. Thematic analysis of semistructured interviews will include results on participant enjoyment and acceptability of SMART-HEALTH and inform modifications for future delivery of the program. Conclusions: This study will strengthen our understanding of the potential benefits of the tele-exercise intervention for people with SCI and build upon adaptive intervention design and its delivery strategies that aim to increase adoption and sustainable exercise behavior. This pilot trial will inform future SMART-designed studies and provide new and innovative strategies for investigating intervention effects on physical activity behavior in the SCI population. Trial Registration: ClinicalTrials.gov NCT04726891; https://classic.clinicaltrials.gov/ct2/show/NCT04726891 International Registered Report Identifier (IRRID): DERR1-10.2196/47665 ", doi="10.2196/47665", url="https://www.researchprotocols.org/2023/1/e47665", url="http://www.ncbi.nlm.nih.gov/pubmed/37498650" } @Article{info:doi/10.2196/41186, author="Mirbaha, Shaghayegh and Morgan, Ashley and Tang, Ada and Smith-Turchyn, Jenna and Richardson, Julie", title="Models of Telehealth Service Delivery in Adults With Spinal Cord Injuries: Scoping Review", journal="JMIR Rehabil Assist Technol", year="2023", month="Jun", day="29", volume="10", pages="e41186", keywords="community-dwelling adults with spinal cord injury", keywords="models of telehealth services", keywords="remotely delivery of health care", keywords="SCI", keywords="scoping review", keywords="spinal cord injury", keywords="telehealth", keywords="telemedicine", keywords="telerehabilitation", keywords="web-based care", abstract="Background: In Canada, approximately 86,000 people live with spinal cord injury (SCI), and there are an estimated 3675 new cases of traumatic or nontraumatic etiology per year. Most people with SCI will experience secondary health complications, such as urinary and bowel issues, pain syndrome, pressure ulcers, and psychological disorders, resulting in severe chronic multimorbidity. Moreover, people with SCI may face barriers in accessing health care services, such as primary care physicians' expert knowledge regarding secondary complications related to SCI. Telehealth, defined as the delivery of information and health-related services through telecommunication technologies, may help address some of the barriers, and indeed, the present global COVID-19 pandemic has emphasized the importance of integration of telehealth in health care systems. As a result of this crisis, health care providers have increased the usage of telehealth services, providing health services to individuals in need of community-based supportive care. However, the evidence on models of telehealth service delivery for adults with SCI has not been previously synthesized. Objective: The purpose of this scoping review was to identify, describe, and compare models of telehealth services for community-dwelling adults with SCI. Methods: This scoping review follows the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines. Studies published between 1990 and December 31, 2022, were identified by searching the Ovid MEDLINE, Ovid Embase, Ovid PsycINFO, Web of Science, and CINAHL databases. Papers with specified inclusion criteria were screened by 2 investigators. Included articles focused on identifying, implementing, or evaluating telehealth interventions, including primary health care services and self-management services delivered in the community and home-based settings. One investigator performed a full-text review of each article, and data extraction included (1) study characteristics; (2) participant characteristics; (3) key characteristics of the interventions, programs, and services; and (4) outcome measures and results. Results: A total of 61 articles reported telehealth services used for preventing, managing, or treating the most common secondary complications and consequences of SCI, including chronic pain, low physical activity, pressure ulcers, and psychosocial dysfunction. Where evidence exists, improvements in community participation, physical activity, and reduction in chronic pain, pressure ulcers, etc, following SCI were demonstrated. Conclusions: Telehealth may offer an efficient and effective option for health service delivery for community-dwelling individuals with SCI, ensuring continuity of rehabilitation, follow-up after hospital discharge, and early detection, management, or treatment of potential secondary complications following SCI. We recommend that the stakeholders involved with patients with SCI consider the uptake of hybridized (blend of web-based and in-person) health care delivery models to optimize the care continuum and self-management of SCI-related care. The findings of this scoping review may be used to inform policy makers, health care professionals, and stakeholders engaged in establishing web-based clinics for individuals with SCI. ", doi="10.2196/41186", url="https://rehab.jmir.org/2023/1/e41186", url="http://www.ncbi.nlm.nih.gov/pubmed/37384377" } @Article{info:doi/10.2196/46575, author="Brehon, Katelyn and MacIsaac, Rob and Bhatia, Zahra and Buck, Taryn and Charbonneau, Rebecca and Crochetiere, Steven and Donia, Scott and Daoust, Jason and Ho, Chester and Kainth, Hardeep and Loewen, Janee and Lorch, Brandice and Mastrodimos, Kiesha and Neunzig, Brittney and Papathanassoglou, Elizabeth and Parmar, Rajvir and Pohar Manhas, Kiran and Tenove, Terry and Velji, Elysha and Loyola-Sanchez, Adalberto", title="Outcomes of Implementing a Webinar-Based Strategy to Improve Spinal Cord Injury Knowledge and Community Building: Convergent Mixed Methods Study", journal="JMIR Rehabil Assist Technol", year="2023", month="Jun", day="23", volume="10", pages="e46575", keywords="spinal cord injury", keywords="telehealth", keywords="webinars", keywords="mixed methods", keywords="implementation", abstract="Background: COVID-19 disrupted services received by persons with spinal cord injury (SCI) worldwide. The International Disability Alliance declared the need for a disability-inclusive response to the COVID-19 crisis, as decreased access to health care services for individuals living with varying levels of function was unacceptable. As a result, an SCI community in Canada created a novel webinar-based strategy aimed at improving access to self-management information for people living with SCI and other stakeholders. However, although telehealth practices have previously been used effectively in SCI management and rehabilitation, little to no scholarship has investigated the outcomes of implementing a webinar-based telehealth strategy in this population. Objective: This study aims to understand the outcomes of implementing the webinar series. Specifically, the authors aimed to determine the reach of the series; understand its impact on social connectedness, perceptions of disability, and overall quality of interactions among persons with SCI, their families, service providers, and the public at large; and explore the long-term sustainability of the initiative. Methods: The authors implemented a community-based participatory strategy to define a convergent mixed methods design to triangulate qualitative and quantitative data collected simultaneously. Quantitative methods included pop-up questions administered during the live webinars, surveys administered following webinars, and an analysis of YouTube analytics. Qualitative methods included semistructured interviews with persons with SCI and health care providers who attended at least one webinar. The results were integrated, following methods adapted from Creswell and Clark. Results: A total of 234 individuals attended at least 1 of the 6 webinars that took place during the 6-month study period. In total, 13.2\% (31/234) of the participants completed the postwebinar survey, and 23\% (7/31) participated in the semistructured interviews. The reach of the webinar series was mainly to persons with SCI, followed by health professionals, with most of them living in urban areas. The topics sexuality and research were the most viewed on YouTube. The knowledge disseminated during the webinars was mainly perceived as valid and useful, related to the fact that the presentation format involved people with lived experience and clinical experts. The webinars did not necessarily help build a new extended community of people involved in SCI but helped strengthen the existing community of people with SCI in Alberta. The webinar positively influenced the perceptions of normality and disability regarding people with SCI. The webinar format was perceived as highly usable and accessible. Conclusions: The webinar series was associated with improved participant knowledge of what is possible to achieve after an SCI and their perceptions of disability. The long-term implementation of this initiative is feasible, but further considerations to increase its reach to rural areas and ensure the integration of diverse individuals should be taken. ", doi="10.2196/46575", url="https://rehab.jmir.org/2023/1/e46575", url="http://www.ncbi.nlm.nih.gov/pubmed/37351945" } @Article{info:doi/10.2196/45652, author="Bolz, Janika and L{\"o}scher, Adrian and Muhl, Rainer and Badke, Andreas and Predel, Hans-Georg and Perret, Claudio", title="Feasibility, Usability, and Safety of ParaGym, an Intelligent Mobile Exercise App for Individuals With Paraplegia: Protocol for a Pilot Block-Randomized Controlled Trial", journal="JMIR Res Protoc", year="2023", month="May", day="19", volume="12", pages="e45652", keywords="spinal cord injury", keywords="mixed methods", keywords="exercise", keywords="fitness", keywords="home-based", keywords="algorithm", keywords="personalization", keywords="prototype", keywords="telemedicine", keywords="digital", keywords="mobile app", keywords="mobile phone", abstract="Background: Exercise is crucial for individuals with paraplegia to reduce the risk of secondary diseases and improve independence and quality of life. However, numerous barriers such as inadequate accessibility restrict their participation in exercise programs. Digital exercise apps can help overcome these barriers. Personalization is considered a crucial feature of mobile exercise apps, as people with paraplegia have individual requirements regarding exercise programs depending on their level of impairment. Despite the increasing popularity of mobile exercise apps, there are none available that target the individual needs of this cohort. The ParaGym mobile exercise app prototype was designed to automatically tailor exercise sessions to the individual needs of users with paraplegia. Objective: This study aims to evaluate the feasibility, usability, safety, and preliminary effectiveness of the ParaGym mobile exercise app prototype. Methods: This pilot block-randomized controlled feasibility trial will include 45 adult participants with paraplegia. Eligible participants will be block randomized to either the intervention or waitlist control group. The intervention group will perform a 6-week exercise program using the ParaGym mobile exercise app, comprising three 35-minute exercise sessions per week. The waitlist control group will continue their usual care and receive access to the app after study completion. Participants will record all exercise sessions conducted with the app as well as additional exercise sessions conducted during the study period using exercise diaries. The primary outcomes include feasibility, usability, and safety. Feasibility will be assessed through semistructured interviews, study adherence, and retention rates. Usability will be measured using the System Usability Scale. Safety will be determined by the occurrence of adverse events. Secondary outcomes include the effects of the intervention on peak exercise capacity (VO2 peak); handgrip strength; independence, which will be measured using the Spinal Cord Independence Measure III (SCIM III); and health-related quality of life, which will be measured using the Short Form--36 Health Survey (SF-36). Results: Recruitment commenced in November 2022. Overall, 12 participants were enrolled at the time of submission. Data collection commenced in January 2023, with completion expected in April 2023. Conclusions: To the best of our knowledge, this is the first study to assess the feasibility, usability, and safety of an intelligent mobile exercise app for individuals with paraplegia. Thereafter, the app should be adapted according to the findings of this trial. Future trials with an updated version of the app should aim for a larger sample size, longer intervention duration, and more diverse target group. In the long term, a fully marketable version of the ParaGym app should be implemented. This would increase the access to personalized, independent, and evidence-based exercise training for this cohort and, in the future, other people who use wheelchairs. Trial Registration: German Clinical Trials Register DRKS00030370; https://drks.de/search/de/trial/DRKS00030370 International Registered Report Identifier (IRRID): DERR1-10.2196/45652 ", doi="10.2196/45652", url="https://www.researchprotocols.org/2023/1/e45652", url="http://www.ncbi.nlm.nih.gov/pubmed/37204855" } @Article{info:doi/10.2196/42679, author="Bernard, M. Renaldo and Seijas, Vanessa and Davis, Micheal and Volkova, Anel and Diviani, Nicola and L{\"u}scher, Janina and Sabariego, Carla", title="Mobile Health Self-management Support for Spinal Cord Injury: Systematic Literature Review", journal="JMIR Mhealth Uhealth", year="2023", month="Apr", day="26", volume="11", pages="e42679", keywords="mobile phone", keywords="mobile health", keywords="mHealth", keywords="eHealth", keywords="telemedicine", keywords="telehealth", keywords="spinal cord injury", keywords="self-management", keywords="internet-based intervention", keywords="World Wide Web", keywords="systematic review", abstract="Background: Self-management plays a critical role in maintaining and improving the health of persons with spinal cord injury (SCI). Despite their potential, existing mobile health (mHealth) self-management support (SMS) tools for SCI have not been comprehensively described in terms of their characteristics and approaches. It is important to have an overview of these tools to know how best to select, further develop, and improve them. Objective: The objective of this systematic literature review was to identify mHealth SMS tools for SCI and summarize their characteristics and approaches to offering SMS. Methods: A systematic review of the literature published between January 2010 and March 2022 was conducted across 8 bibliographic databases. The data synthesis was guided by the self-management task taxonomy by Corbin and Strauss, the self-management skill taxonomy by Lorig and Holman, and the Practical Reviews in Self-Management Support taxonomy. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) standards guided the reporting. Results: A total of 24 publications reporting on 19 mHealth SMS tools for SCI were included. These tools were introduced from 2015 onward and used various mHealth technologies and multimedia formats to provide SMS using 9 methods identified by the Practical Reviews in Self-Management Support taxonomy (eg, social support and lifestyle advice and support). The identified tools focused on common SCI self-management areas (eg, bowel, bladder, and pain management) and overlooked areas such as sexual dysfunction problems and environmental problems, including barriers in the built environment. Most tools (12/19, 63\%) unexpectedly supported a single self-management task instead of all 3 tasks (ie, medical, role, and emotional management), and emotional management tasks had very little support. All self-management skills (eg, problem-solving, decision-making, and action planning) had coverage, but a single tool addressed resource use. The identified mHealth SMS tools were similar in terms of number, introduction period, geographical distribution, and technical sophistication compared with SMS tools for other chronic conditions. Conclusions: This systematic literature review provides one of the first descriptions of mHealth SMS tools for SCI in terms of their characteristics and approaches to offering SMS. This study's findings highlight a need for increased coverage of key SMS for SCI components; adopting comparable usability, user experience, and accessibility evaluation methods; and related research to provide more detailed reporting. Future research should consider other data sources such as app stores and technology-centric bibliographic databases to complement this compilation by identifying other possibly overlooked mHealth SMS tools. A consideration of this study's findings is expected to support the selection, development, and improvement of mHealth SMS tools for SCI. ", doi="10.2196/42679", url="https://mhealth.jmir.org/2023/1/e42679", url="http://www.ncbi.nlm.nih.gov/pubmed/37099372" } @Article{info:doi/10.2196/42688, author="Newman, Dunreath Susan and Toatley, Sherwood and Rodgers, Danielle Marka and Qanungo, Suparna and Mueller, Martina and Denny, Brian and Rodriguez, Angela", title="Feasibility of a Community-Based, Online, Peer-Supported Spinal Cord Injury Self-management Intervention: Protocol for a Pilot Wait-Listed Randomized Trial", journal="JMIR Res Protoc", year="2023", month="Feb", day="7", volume="12", pages="e42688", keywords="spinal cord injury", keywords="peer support", keywords="self-management", keywords="telehealth", keywords="community engaged research", keywords="community participation", abstract="Background: People with spinal cord injury (SCI) report feeling unprepared to manage their disability upon discharge to the community. This situation is exacerbated when they return to settings where self-management support and resources are sparse, thus increasing the risk of costly secondary conditions and rehospitalizations. These factors make a compelling case for implementing innovative community-based SCI self-management programs that empower and engage individuals with SCI. Using a community-engaged research (CEnR) approach, we developed a peer-supported SCI self-management intervention, known as PHOENIX (Peer-supported Health Outreach, Education, and Information Exchange), which integrates online educational content and support from peer navigators (PNs) through telehealth, to promote health and community participation after SCI. Objective: The objective of this pilot study is to evaluate the feasibility and acceptability of PHOENIX and the study design, and to obtain estimates of the variability of relevant outcome measures. Methods: We conducted a pilot randomized waitlist-controlled trial (n=30) in collaboration with the South Carolina Spinal Cord Injury Association (SCSCIA), our long-standing community-based nonprofit organization research partner. We recruited 4 PNs through our SCSCIA collaboration using its existing network of trained peer mentors. Our study design supported comparison of the following 2 randomly assigned groups: PHOENIX intervention group and waitlist enhanced usual care (EUC) group. The PHOENIX intervention was administered online by PNs over 16 weeks through scheduled ``video visits.'' The EUC group participated in the study for 16 weeks with usual community services and no navigation, and received 4 monthly newsletters from the SCSCIA on a variety of SCI-relevant topics. At the end of the waitlist period, the waitlist EUC group received the full PHOENIX intervention. Measures of feasibility included PN and participant recruitment and retention, PN workload, protocol adherence, and incidence of technical issues. We conducted qualitative interviews with participants and PNs to evaluate the acceptability of PHOENIX and the study design. Outcome measures, including community participation, quality of life, and the occurrence and subjective impact of medically serious secondary conditions and rehospitalizations, were assessed at baseline after randomization and at subsequent time points to allow between-group comparisons. Results: PN hiring and training were completed in August 2018. Recruitment began in November 2018. A total of 30 participants were recruited across South Carolina, and 28 participants completed follow-up by August 2020. An analysis of the results is being finalized, and the results are expected to be published in 2023. Conclusions: This study will provide valuable information to guide future research seeking to address unmet self-management needs and improve outcomes in individuals with SCI. Feasibility findings of this study will provide evidence from CEnR guided by people with SCI and SCI service providers to inform further development, testing, and dissemination of effective and scalable self-management strategies for people with SCI. International Registered Report Identifier (IRRID): RR1-10.2196/42688 ", doi="10.2196/42688", url="https://www.researchprotocols.org/2023/1/e42688", url="http://www.ncbi.nlm.nih.gov/pubmed/36749612" } @Article{info:doi/10.2196/40166, author="Morgan, A. Kerri and Wong, K. Alex W. and Walker, Kim and Desai, Heeb Rachel and Knepper, M. Tina and Newland, K. Pamela", title="A Mobile Phone Text Messaging Intervention to Manage Fatigue for People With Multiple Sclerosis, Spinal Cord Injury, and Stroke: Development and Usability Testing", journal="JMIR Form Res", year="2022", month="Dec", day="21", volume="6", number="12", pages="e40166", keywords="fatigue", keywords="disability", keywords="mobile health", keywords="mHealth", keywords="patient activation", abstract="Background: Fatigue significantly affects daily functioning in persons with disabilities. Fatigue management can be challenging, and the information provided during routine physician visits to manage fatigue can be overwhelming. One way to address fatigue is to increase knowledge, skills, and confidence for self-management (ie, patient activation). Self-management programs have shown promising effects in targeting fatigue in persons with disabilities. However, satisfaction with self-management programs is low for persons with disabilities, and tailoring interventions to personalized needs has been recommended. SMS text messaging is increasingly being used to implement health behavior change interventions in a person's natural environment. Little has been done to link mobile health approaches with patient activation and self-management to address fatigue in persons with disabilities. Objective: This study aimed to develop and test a mobile phone--based fatigue self-management SMS text messaging intervention targeting patient activation in 3 groups of persons with disabilities: persons with multiple sclerosis, persons who had a stroke, and persons with a spinal cord injury. Methods: We used evidence-based resources and input from a consumer advisory board (CAB; composed of 2 participants from each of the 3 disability groups) and a neurologist to develop the intervention. The study was conducted using a 4-step process: development of the initial SMS text messaging library and categorization of the content into 9 content areas, review and modification of the SMS text messages by the neurologist and CAB, integration of the content library into a digital platform, and utility testing by CAB members. Results: A total of 6 CAB participants rated SMS text messages covering 9 domain areas of fatigue self-management with good clarity (mean ratings=3.5-5.0 out of 5) and relevance (mean ratings=3.2-5.0 out of 5). Overall, SMS text messaging content was reported by CAB participants as helpful, clear, and well suited for a mobile health intervention. The CAB reached consensus on the time of day that SMS text messages should be sent (morning) and their frequency (once per day). This feedback led the research team to narrow down the program to deliver 48 SMS text messages, 1 per day, Monday through Thursday only, a total of 4 SMS text messages per week, over a 12-week period. The final set of SMS text messages was programmed into a digital platform with a predefined delivery schedule. The usability of the intervention was high, with 55 (83\%) out of 66 responses endorsing the highest rating. Conclusions: This study demonstrates a step-by-step process for developing a fatigue self-management SMS text messaging intervention for persons with disabilities. For this population, whose access to health services is often limited, this intervention provides an alternative delivery model to increase access to fatigue information and deliver content that aligns with the person's needs. ", doi="10.2196/40166", url="https://formative.jmir.org/2022/12/e40166", url="http://www.ncbi.nlm.nih.gov/pubmed/36542466" } @Article{info:doi/10.2196/41152, author="Athanasiou, Alkinoos and Mitsopoulos, Konstantinos and Praftsiotis, Apostolos and Astaras, Alexander and Antoniou, Panagiotis and Pandria, Niki and Petronikolou, Vasileia and Kasimis, Konstantinos and Lyssas, George and Terzopoulos, Nikos and Fiska, Vasilki and Kartsidis, Panagiotis and Savvidis, Theodoros and Arvanitidis, Athanasios and Chasapis, Konstantinos and Moraitopoulos, Alexandros and Nizamis, Kostas and Kalfas, Anestis and Iakovidis, Paris and Apostolou, Thomas and Magras, Ioannis and Bamidis, Panagiotis", title="Neurorehabilitation Through Synergistic Man-Machine Interfaces Promoting Dormant Neuroplasticity in Spinal Cord Injury: Protocol for a Nonrandomized Controlled Trial", journal="JMIR Res Protoc", year="2022", month="Sep", day="13", volume="11", number="9", pages="e41152", keywords="body-machine interface", keywords="brain-computer interface", keywords="neural rehabilitation", keywords="serious games", keywords="spinal cord injury", keywords="wearable robotics", abstract="Background: Spinal cord injury (SCI) constitutes a major sociomedical problem, impacting approximately 0.32-0.64 million people each year worldwide; particularly, it impacts young individuals, causing long-term, often irreversible disability. While effective rehabilitation of patients with SCI remains a significant challenge, novel neural engineering technologies have emerged to target and promote dormant neuroplasticity in the central nervous system. Objective: This study aims to develop, pilot test, and optimize a platform based on multiple immersive man-machine interfaces offering rich feedback, including (1) visual motor imagery training under high-density electroencephalographic recording, (2) mountable robotic arms controlled with a wireless brain-computer interface (BCI), (3) a body-machine interface (BMI) consisting of wearable robotics jacket and gloves in combination with a serious game (SG) application, and (4) an augmented reality module. The platform will be used to validate a self-paced neurorehabilitation intervention and to study cortical activity in chronic complete and incomplete SCI at the cervical spine. Methods: A 3-phase pilot study (clinical trial) was designed to evaluate the NeuroSuitUp platform, including patients with chronic cervical SCI with complete and incomplete injury aged over 14 years and age-/sex-matched healthy participants. Outcome measures include BCI control and performance in the BMI-SG module, as well as improvement of functional independence, while also monitoring neuropsychological parameters such as kinesthetic imagery, motivation, self-esteem, depression and anxiety, mental effort, discomfort, and perception of robotics. Participant enrollment into the main clinical trial is estimated to begin in January 2023 and end by December 2023. Results: A preliminary analysis of collected data during pilot testing of BMI-SG by healthy participants showed that the platform was easy to use, caused no discomfort, and the robotics were perceived positively by the participants. Analysis of results from the main clinical trial will begin as recruitment progresses and findings from the complete analysis of results are expected in early 2024. Conclusions: Chronic SCI is characterized by irreversible disability impacting functional independence. NeuroSuitUp could provide a valuable complementary platform for training in immersive rehabilitation methods to promote dormant neural plasticity. Trial Registration: ClinicalTrials.gov NCT05465486; https://clinicaltrials.gov/ct2/show/NCT05465486 International Registered Report Identifier (IRRID): PRR1-10.2196/41152 ", doi="10.2196/41152", url="https://www.researchprotocols.org/2022/9/e41152", url="http://www.ncbi.nlm.nih.gov/pubmed/36099009" } @Article{info:doi/10.2196/37618, author="Chen, Guilian and Wang, Tong and Zhong, Lirong and He, Xinghui and Huang, Chunxia and Wang, Yingmin and Li, Kun", title="Telemedicine for Preventing and Treating Pressure Injury After Spinal Cord Injury: Systematic Review and Meta-analysis", journal="J Med Internet Res", year="2022", month="Sep", day="7", volume="24", number="9", pages="e37618", keywords="spinal cord injury", keywords="pressure injury, telemedicine", keywords="systematic reviews", keywords="meta-analyses", keywords="network meta-analyses", keywords="review", keywords="spinal injury", keywords="spinal cord", keywords="pressure injury", keywords="injury", abstract="Background: Pressure injury is a common complication after a spinal cord injury. Long-term multidisciplinary follow-up is difficult after such patients have been discharged. Telemedicine promises to provide convenient and effective support for the prevention and treatment of pressure injury, but previous attempts to demonstrate that have produced inconsistent results. Objective: The aim of this study is to evaluate the effectiveness of telemedicine in preventing and treating pressure injury among community-dwelling patients with spinal cord injury, and determine which telemedicine form is more effective. Methods: This systematic review was performed according to the PRISMA-NMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Network Meta-Analysis) standards. Ten databases were searched to identify randomized controlled trials and quasi-experimental studies related to the effectiveness of telemedicine intervention in patients with spinal cord injury. Two researchers worked independently and blindly selected studies, extracted data, and assessed the risk of bias. The results were described as relative risk (RR) and weighted mean difference and 95\% CI. Results: The 35 studies comprised 25 randomized controlled trials and 10 quasi-experimental studies involving 3131 patients. The results showed that telemedicine can significantly (P<.05) reduce the incidence of pressure injury (RR 0.24, 95\% CI 0.14-0.41; P<.05; I2=0\%), promote faster healing (RR 0.73, 95\% CI 0.62-0.85; P<.05; I2=0\%), and yield lower scores on the pressure ulcer scale of healing (weighted mean difference=--1.98, 95\% CI --3.51 to --0.46; P<.05; I2=0\%). Cumulative ranking estimates showed that combining telemedicine with conventional intervention (93.5\%) was the most effective approach. Conclusions: Telemedicine is a feasible way to prevent pressure injury among patients with spinal cord injuries. It can decrease the incidence and severity of pressure injury and accelerate patients' healing without imposing economic burden. It is best used in tandem with other, more conventional interventions. Due to the limited quality and quantity of included studies, large-scale and well-designed randomized controlled trials are warranted. ", doi="10.2196/37618", url="https://www.jmir.org/2022/9/e37618", url="http://www.ncbi.nlm.nih.gov/pubmed/36069842" } @Article{info:doi/10.2196/34303, author="Lawrason, Clewes Sarah Victoria and Brown-Ganzert, Lynda and Campeau, Lysa and MacInnes, Megan and Wilkins, J. C. and Martin Ginis, Anne Kathleen", title="mHealth Physical Activity Intervention for Individuals With Spinal Cord Injury: Planning and Development Processes", journal="JMIR Form Res", year="2022", month="Aug", day="19", volume="6", number="8", pages="e34303", keywords="exercise", keywords="stakeholder participation", keywords="spinal cord injuries", keywords="telemedicine", keywords="mobile apps", keywords="mobile phone", abstract="Background: Interventions to support physical activity participation among individuals with spinal cord injury (SCI) are required given this population's low levels of physical activity and extensive barriers to quality physical activity experiences. Objective: This study aimed to develop a mobile health intervention, called SCI Step Together, to improve the quantity and quality of physical activity among individuals with SCI who walk. Methods: Our overarching methodological framework was the Person-Based approach. This included the following 4 steps: conduct primary and secondary research (step 1); design intervention objectives and features (step 2a); conduct behavioral analysis and theory (step 2b); create a logic model (step 3); and complete the SCI Step Together program content and integrated knowledge translation (IKT; step 4), which occurred throughout development. The partnership approach was informed by the SCI IKT Guiding Principles. Three end users pilot-tested the app and participated in the interviews. Results: Step 1 identified issues to be addressed when designing intervention objectives and features (step 2a) and features were mapped onto the Behavior Change Wheel (step 2b) to determine the behavior change techniques (eg, action planning) to be included in the app. The logic model linked the mechanisms of action to self-determination theory (steps 2/3). Interviews with end users generated recommendations for the technology (eg, comparing physical activity levels with guidelines), trial (eg, emailing participants' worksheets), and intervention content (eg, removing graded tasks; step 4). Conclusions: Using the SCI IKT Guiding Principles to guide partner engagement and involvement ensured that design partners had shared decision-making power in intervention development. Equal decision-making power maximizes the meaningfulness of the app for end users. Future research will include testing the acceptability, feasibility, and engagement of the program. Partners will be involved throughout the research process. Trial Registration: ClinicalTrials.gov: NCT05063617; https://clinicaltrials.gov/ct2/show/NCT05063617 ", doi="10.2196/34303", url="https://formative.jmir.org/2022/8/e34303", url="http://www.ncbi.nlm.nih.gov/pubmed/35984695" } @Article{info:doi/10.2196/38616, author="Bray, Alice Emily and Everett, Bronwyn and George, Ajesh and Salamonson, Yenna and Ramjan, M. Lucie", title="Developing a Health Care Transition Intervention With Young People With Spinal Cord Injuries: Co-design Approach", journal="JMIR Form Res", year="2022", month="Jul", day="28", volume="6", number="7", pages="e38616", keywords="co-design", keywords="participatory action research", keywords="health care transition", keywords="pediatric health care", keywords="adult health care", keywords="spinal cord injury", abstract="Background: Successful transition from pediatric to adult health care settings supports long-term health management and better overall outcomes in all domains. However, young people with spinal cord injuries (SCIs) continue to report challenges and unmet needs during the transition process. Including end users in health care research and intervention design is paramount as interventions designed in this way better meet their specific needs and are often more innovative. Although studies have reported involving young people with chronic conditions in the development of health care transition (HCT) interventions, few details have been provided as to how this was achieved. Objective: This study outlined the co-design and development of an HCT intervention to support young people with SCIs. It contextualized the co-design process, methods, materials used, and steps implemented from defining the problem to conceiving and designing the solution. This was accomplished by understanding and listening to end users' needs and recommendations for HCT. Methods: Using participatory methods, this qualitative study reports the co-design of an HCT intervention to support young people with SCIs and parents or caregivers. Two co-design workshops were conducted: one with young people with SCIs and one with parents and caregivers. Categories were defined through a hybrid deductive and inductive qualitative content analysis process that was informed by the Care Transitions Framework and guided the development of the HCT intervention. Following the creation of a prototype intervention, young people with SCIs, parents and caregivers, and key pediatric SCI stakeholders provided feedback on the intervention content and design in focus groups. Similar to the workshops, the focus groups were analyzed using a hybrid deductive and inductive qualitative content analysis process informed by the Care Transitions Framework. The Enhancing the Quality and Transparency of Health Research guidelines for qualitative research (Consolidated Criteria for Reporting Qualitative Research) were applied. Results: Overall, 4 young people and 4 parents or caregivers participated in the co-design workshops. Key recommendations for the HCT intervention were that participants wanted a ``one-stop shop'' for all their transition information needs and an editable portable medical summary to take with them to appointments. On the basis of the analysis of participants' recommendations from the workshops, it was determined that a website would be an appropriate hosting platform for the interventions. The focus group feedback on the design and content of the prototype website was extremely positive, with minor recommendations for improvement. Conclusions: This is the first study to co-design and develop an HCT intervention in partnership with young people with SCIs and parents and caregivers. Although the study sample was small, it has shown that it is possible to meaningfully engage and empower young people with SCIs and parents and caregivers in the co-design of an HCT intervention. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2021-053212 ", doi="10.2196/38616", url="https://formative.jmir.org/2022/7/e38616", url="http://www.ncbi.nlm.nih.gov/pubmed/35900814" } @Article{info:doi/10.2196/30611, author="Abu Mostafa, Moussa and Plastow, Ann Nicola and Savin-Baden, Maggi and Ayele, Birhanu", title="The Impact of an Evidence-Informed Spinal Cord Injury Activities of Daily Living Education Manual (SADL-eM): Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2022", month="Jul", day="22", volume="11", number="7", pages="e30611", keywords="occupational therapy", keywords="educational intervention", keywords="activities of daily living", keywords="spinal cord injury", keywords="clinical trials", abstract="Background: Spinal cord injury (SCI) is a catastrophic injury associated with functional loss and life-threatening complications. Many people with SCI in the Gaza Strip of Palestine are discharged from inpatient rehabilitation to the community while still lacking many daily life skills. This randomized controlled trial (RCT) seeks to test the impact of the Spinal Cord Injury Activities of Daily Living Education Manual (SADL-eM)---an evidence-based occupational therapy patient educational intervention---on rehabilitation outcomes. Objective: The proposed trial aims to evaluate the SADL-eM intervention compared with standard treatment among people with SCI. Methods: This is a parallel RCT with two study arms: intervention and control. A total of 90 patients treated in inpatient rehabilitation settings will be randomly allocated to two study groups. Both groups will receive standard care. The intervention group will also use the SADL-eM with their treating occupational therapist during rehabilitation. The SADL-eM is a comprehensive activities of daily living (ADL) educational tool that was codeveloped with people with SCI and stakeholders across Gaza. The self-report version of the Spinal Cord Independence Measure will be used on admission (ie, baseline measure) and after 6 weeks as the primary outcome measure. Secondary outcomes include the third version of the Spinal Cord Independence Measure, the Private Religiousness Practices Scale, the Organizational Religiousness Short-Form, additional ADL domains covered by the education manual, and adherence to the intervention. The effect of the intervention will be determined using repeated-measures analysis of variance. Results: This study will be conducted from April 2021 through December 2022, with results expected to be available in January 2023. Conclusions: If the SADL-eM is demonstrated as clinically effective, this will have significant implications for occupational therapy interventions in low- and middle-income countries. Trial Registration: ClinicalTrials.gov NCT04735887; https://clinicaltrials.gov/ct2/show/NCT04735887 ", doi="10.2196/30611", url="https://www.researchprotocols.org/2022/7/e30611", url="http://www.ncbi.nlm.nih.gov/pubmed/35867399" } @Article{info:doi/10.2196/27692, author="Irgens, Ingebj{\o}rg and Midelfart-Hoff, Jana and Jelnes, Rolf and Alexander, Marcalee and Stanghelle, Kvalvik Johan and Thoresen, Magne and Rekand, Tiina", title="Videoconferencing in Pressure Injury: Randomized Controlled Telemedicine Trial in Patients With Spinal Cord Injury", journal="JMIR Form Res", year="2022", month="Apr", day="19", volume="6", number="4", pages="e27692", keywords="telemedicine", keywords="telecommunication", keywords="videoconference", keywords="outpatient follow-up", keywords="spinal cord injury", keywords="pressure injury", keywords="healing", keywords="participant satisfaction", keywords="participant interaction", keywords="health-related quality of life", abstract="Background: Geographical, financial and travel-related barriers may impact access to necessary health care for people in need of long-term follow-up. Objective: The goal of the research was to perform a nonblinded, randomized, controlled trial on health-related quality of life (HRQoL), healing, interaction, and satisfaction of patients with spinal cord injury (SCI) and PI receiving multidisciplinary videoconference consultations from a wound clinic to the participant's home versus regular outpatient care. The multidisciplinary team consisted of a medical doctor, a wound nurse, and an occupational therapist. In both groups, district nurses attended the consultations at the participant's home. Methods: A total of 56 participants, 28 in each group, were randomized to a videoconference group (VCG) or a regular care group (RCG). Validated questionnaires were used to measure and compare the follow-up effect on HRQoL. Percentage reduction of wound volume was measured at end of the follow-up. A Likert scale was used to measure the satisfaction of the patients and district nurses regarding the interaction between different modalities of care in the 2 groups. Results: The HRQoL did not show significant differences between the 2 groups (P values ranging from .09 to .88) or the rate of PI healing, experienced interaction, and satisfaction in the groups. A total of 67\% (37/55) of all PIs healed, 64\% (18/28) in the VCG and 70\% (19/27) in the RCG. Mean reduction in ulcer volume was 79\% in the VCG and 85\% in the RCG (P=.32). A Kaplan-Meier plot with a logrank test regarding time to healing did not show any significant difference between the 2 groups. Conclusions: Videoconference-based care seems to be a safe and efficient way to manage PIs in terms of HRQoL, healing, interaction, and satisfaction compared to conventional care for people with SCI. This should be considered when planning for future care. SCI has a huge impact on the individual, the family, and the health care system. There is an urgent need to improve systems of care so that individuals who live far from specialists and require long-term follow-up for conditions such as PI can get optimal treatment. Trial Registration: ClinicalTrials.gov NCT02800915; https://clinicaltrials.gov/ct2/show/NCT02800915 and Current Research Information System in Norway (CRISTIN) 545284; https://app.cristin.no/projects/show.jsf?id=545284 ", doi="10.2196/27692", url="https://formative.jmir.org/2022/4/e27692", url="http://www.ncbi.nlm.nih.gov/pubmed/35438645" } @Article{info:doi/10.2196/23794, author="Chowdhary, Kuntal and Yu, Xie Daihua and Pramana, Gede and Mesoros, Matthew and Fairman, Andrea and Dicianno, Edward Brad and Parmanto, Bambang", title="User-Centered Design to Enhance mHealth Systems for Individuals With Dexterity Impairments: Accessibility and Usability Study", journal="JMIR Hum Factors", year="2022", month="Feb", day="24", volume="9", number="1", pages="e23794", keywords="cellular phone", keywords="mobile apps", keywords="telemedicine", keywords="adaptive mHealth", keywords="rehabilitation", keywords="self-care", keywords="spinal cord injury", keywords="spina bifida", keywords="chronic disease", keywords="persons with disability", keywords="accessibility", keywords="dexterity impairments", keywords="mobile phone", abstract="Background: Mobile health systems have been shown to be useful in supporting self-management by promoting adherence to schedules and longitudinal health interventions, especially in people with disabilities. The Interactive Mobile Health and Rehabilitation (iMHere) system was developed to empower people with disabilities and those with chronic conditions with supports needed for self-management and independent living. Since the first iteration of the iMHere 1.0 app, several studies have evaluated the accessibility and usability of the system. Potential opportunities to improve and simplify the user interface were identified, and the iMHere modules were redesigned accordingly. Objective: In this study, we aim to evaluate the usability of the redesigned modules within the iMHere 1.0 app. Methods: We evaluated the original and redesigned iMHere modules---MyMeds and SkinCare. The Purdue Pegboard Test was administered to assess the participants' dexterity levels. Participants were then asked to perform a set of tasks using both the original and redesigned MyMeds and SkinCare modules to assess their efficiency and effectiveness. Usability was measured using the Telehealth Usability Questionnaire to evaluate 10 new accessibility features that were added to the redesigned app. Participants were also asked which version they preferred. Results: In total, 24 participants with disabilities and varying degrees of dexterity impairments completed the entire study protocol. Participants displayed improved efficiency and effectiveness when using the redesigned modules compared with the original modules. The participants also reported improved usability and preferred the redesigned modules. Conclusions: This study demonstrated that the iMHere system became more efficient, effective, and usable for individuals with dexterity impairments after redesigning it according to user-centered principles. ", doi="10.2196/23794", url="https://humanfactors.jmir.org/2022/1/e23794", url="http://www.ncbi.nlm.nih.gov/pubmed/35200144" } @Article{info:doi/10.2196/27637, author="Hoevenaars, Dirk and Yocarini, E. Iris and Paraschiakos, Stylianos and Holla, M. Jasmijn F. and de Groot, Sonja and Kraaij, Wessel and Janssen, J. Thomas W.", title="Accuracy of Heart Rate Measurement by the Fitbit Charge 2 During Wheelchair Activities in People With Spinal Cord Injury: Instrument Validation Study", journal="JMIR Rehabil Assist Technol", year="2022", month="Jan", day="19", volume="9", number="1", pages="e27637", keywords="Fitbit Charge 2", keywords="heart rate", keywords="accuracy", keywords="photoplethysmography", keywords="spinal cord injury", abstract="Background: Heart rate (HR) is an important and commonly measured physiological parameter in wearables. HR is often measured at the wrist with the photoplethysmography (PPG) technique, which determines HR based on blood volume changes, and is therefore influenced by blood pressure. In individuals with spinal cord injury (SCI), blood pressure control is often altered and could therefore influence HR accuracy measured by the PPG technique. Objective: The objective of this study is to investigate the HR accuracy measured with the PPG technique with a Fitbit Charge 2 (Fitbit Inc) in wheelchair users with SCI, how the activity intensity affects the HR accuracy, and whether this HR accuracy is affected by lesion level. Methods: The HR of participants with (38/48, 79\%) and without (10/48, 21\%) SCI was measured during 11 wheelchair activities and a 30-minute strength exercise block. In addition, a 5-minute seated rest period was measured in people with SCI. HR was measured with a Fitbit Charge 2, which was compared with the HR measured by a Polar H7 HR monitor used as a reference device. Participants were grouped into 4 groups---the no SCI group and based on lesion level into the T1 (cervical) group. Mean absolute percentage error (MAPE) and concordance correlation coefficient were determined for each group for each activity type, that is, rest, wheelchair activities, and strength exercise. Results: With an overall MAPEall lesions of 12.99\%, the accuracy fell below the standard acceptable MAPE of --10\% to +10\% with a moderate agreement (concordance correlation coefficient=0.577). The HR accuracy of Fitbit Charge 2 seems to be reduced in those with cervical lesion level in all activities (MAPEno SCI=8.09\%; MAPET1=20.43\%). The accuracy of the Fitbit Charge 2 decreased with increasing intensity in all lesions (MAPErest=6.5\%, MAPEactivity=12.97\%, and MAPEstrength=14.2\%). Conclusions: HR measured with the PPG technique showed lower accuracy in people with SCI than in those without SCI. The accuracy was just above the acceptable level in people with paraplegia, whereas in people with tetraplegia, a worse accuracy was found. The accuracy seemed to worsen with increasing intensities. Therefore, high-intensity HR data, especially in people with cervical lesions, should be used with caution. ", doi="10.2196/27637", url="https://rehab.jmir.org/2022/1/e27637", url="http://www.ncbi.nlm.nih.gov/pubmed/35044306" } @Article{info:doi/10.2196/32842, author="Carlozzi, E. Noelle and Choi, Won Sung and Wu, Zhenke and Miner, A. Jennifer and Lyden, K. Angela and Graves, Christopher and Wang, Jitao and Sen, Srijan", title="An App-Based Just-in-Time Adaptive Self-management Intervention for Care Partners (CareQOL): Protocol for a Pilot Trial", journal="JMIR Res Protoc", year="2021", month="Dec", day="9", volume="10", number="12", pages="e32842", keywords="caregivers", keywords="quality of life", keywords="spinal cord injuries", keywords="Huntington disease", keywords="hematopoietic stem cell transplantation", keywords="feasibility studies", keywords="self-management", keywords="mobile apps", keywords="outcome assessment", keywords="mobile phone", abstract="Background: Care partners (ie, informal family caregivers) of individuals with health problems face considerable physical and emotional stress, often with a substantial negative impact on the health-related quality of life (HRQOL) of both care partners and care recipients. Given that these individuals are often overwhelmed by their caregiving responsibilities, low-burden self-management interventions are needed to support care partners to ensure better patient outcomes. Objective: The primary objective of this study is to describe an intensive data collection protocol that involves the delivery of a personalized just-in-time adaptive intervention that incorporates passive mobile sensor data feedback (sleep and activity data from a Fitbit [Fitbit LLC]) and real time self-reporting of HRQOL via a study-specific app called CareQOL (University of Michigan) to provide personalized feedback via app alerts. Methods: Participants from 3 diverse care partner groups will be enrolled (care partners of persons with spinal cord injury, care partners of persons with Huntington disease, and care partners of persons with hematopoietic cell transplantation). Participants will be randomized to either a control group, where they will wear the Fitbit and provide daily reports of HRQOL over a 3-month (ie, 90 days) period (without personalized feedback), or the just-in-time adaptive intervention group, where they will wear the Fitbit, provide daily reports of HRQOL, and receive personalized push notifications for 3 months. At the end of the study, participants will complete a feasibility and acceptability questionnaire, and metrics regarding adherence and attrition will be calculated. Results: This trial opened for recruitment in November 2020. Data collection was completed in June 2021, and the primary results are expected to be published in 2022. Conclusions: This trial will determine the feasibility and acceptability of an intensive app-based intervention in 3 distinct care partner groups: care partners for persons with a chronic condition that was caused by a traumatic event (ie, spinal cord injury); care partners for persons with a progressive, fatal neurodegenerative disease (ie, Huntington disease); and care partners for persons with episodic cancer conditions that require intense, prolonged inpatient and outpatient treatment (persons with hematopoietic cell transplantation). Trial Registration: ClinicalTrials.gov NCT04556591; https://clinicaltrials.gov/ct2/show/NCT04556591 International Registered Report Identifier (IRRID): DERR1-10.2196/32842 ", doi="10.2196/32842", url="https://www.researchprotocols.org/2021/12/e32842", url="http://www.ncbi.nlm.nih.gov/pubmed/34889775" } @Article{info:doi/10.2196/28267, author="Brehon, Katelyn and Carriere, Jay and Churchill, Katie and Loyola-Sanchez, Adalberto and O'Connell, Petra and Papathanassoglou, Elisavet and MacIsaac, Rob and Tavakoli, Mahdi and Ho, Chester and Pohar Manhas, Kiran", title="Evaluating Community-Facing Virtual Modalities to Support Complex Neurological Populations During the COVID-19 Pandemic: Protocol for a Mixed Methods Study", journal="JMIR Res Protoc", year="2021", month="Jul", day="23", volume="10", number="7", pages="e28267", keywords="telehealth", keywords="evaluation", keywords="rehabilitation", keywords="musculoskeletal", keywords="neurological", keywords="COVID-19", keywords="spinal cord injury", keywords="advice line", keywords="webinar", keywords="artificial intelligence", keywords="machine learning", keywords="community engagement", abstract="Background: The COVID-19 pandemic and concomitant governmental responses have created the need for innovative and collaborative approaches to deliver services, especially for populations that have been inequitably affected. In Alberta, Canada, two novel approaches were created in Spring 2020 to remotely support patients with complex neurological conditions and rehabilitation needs. The first approach is a telehealth service that provides wayfinding and self-management advice to Albertans with physical concerns related to existing neurological or musculoskeletal conditions or post-COVID-19 recovery needs. The second approach is a webinar series aimed at supporting self-management and social connectedness of individuals living with spinal cord injury. Objective: The study aims to evaluate the short- and long-term impacts and sustainability of two virtual modalities (telehealth initiative called Rehabilitation Advice Line [RAL] and webinar series called Alberta Spinal Cord Injury Community Interactive Learning Seminars [AB-SCILS]) aimed at advancing self-management, connectedness, and rehabilitation needs during the COVID-19 pandemic and beyond. Methods: We will use a mixed-methods evaluation approach. Evaluation of the approaches will include one-on-one semistructured interviews and surveys. The evaluation of the telehealth initiative will include secondary data analyses and analysis of call data using artificial intelligence. The evaluation of the webinar series will include analysis of poll questions collected during the webinars and YouTube analytics data. Results: The proposed study describes unique pandemic virtual modalities and our approaches to evaluating them to ensure effectiveness and sustainability. Implementing and evaluating these virtual modalities synchronously allows for the building of knowledge on the complementarity of these methods. At the time of submission, we have completed qualitative and quantitative data collection for the telehealth evaluation. For the webinar series, so far, we have distributed the evaluation survey following three webinars and have conducted five attendee interviews. Conclusions: Understanding the impact and sustainability of the proposed telehealth modalities is important. The results of the evaluation will provide data that can be actioned and serve to improve other telehealth modalities in the future, since health systems need this information to make decisions on resource allocation, especially in an uncertain pandemic climate. Evaluating the RAL and AB-SCILS to ensure their effectiveness demonstrates that Alberta Health Services and the health system care about ensuring the best practice even after a shift to primarily virtual care. International Registered Report Identifier (IRRID): DERR1-10.2196/28267 ", doi="10.2196/28267", url="https://www.researchprotocols.org/2021/7/e28267", url="http://www.ncbi.nlm.nih.gov/pubmed/34101610" } @Article{info:doi/10.2196/24276, author="Ochoa, Christa and Cole, Maria and Froehlich-Grobe, Katherine", title="Feasibility of an Internet-Based Intervention to Promote Exercise for People With Spinal Cord Injury: Observational Pilot Study", journal="JMIR Rehabil Assist Technol", year="2021", month="Jun", day="9", volume="8", number="2", pages="e24276", keywords="spinal cord injury", keywords="lifestyle intervention", keywords="physical activity", keywords="health promotion", keywords="eHealth", abstract="Background: People with spinal cord injury (SCI) are less likely to be physically active and have higher chronic disease risk than those in the general population due to physical and metabolic changes that occur postinjury. Few studies have investigated approaches to promote increased physical activity (PA) for people with SCI despite evidence that they face unique barriers, including lack of accessible transportation and exercise equipment. To address these obstacles, we adapted an evidence-based phone-delivered intervention that promoted increased PA among people with SCI into a web-based platform, titled the Workout on Wheels internet intervention (WOWii). The adapted program provides participants with weekly skill-building information and activities, basic exercise equipment, and ongoing support through weekly group videoconferencing. Objective: This pilot study was conducted to assess the feasibility of using a web-based and virtual format to deliver the WOWii program in a randomized controlled trial. Methods: We assessed the feasibility of the web-based program by delivering an abbreviated, 4-week version to 10 participants with SCI. Rates of weekly videoconference attendance, activity completion, and exercise activity as tracked by an arm-based activity monitor were recorded for all participants. Results: Participants averaged 3.3 of 4 (83\%) weekly group videoconferences attended, 3.4 of 4 (85\%) web-based module activities completed, and 2.3 of 4 (58\%) weeks of using the arm-based activity monitor. The majority of the sample (9/10, 90\%) synced their arm-based PA monitor at least once, and overall engagement as an average of each component across the 4 weeks was 75\%. Conclusions: The intervention had sufficiently high levels of engagement to be used in a full randomized controlled trial to test its effectiveness in improving levels of PA among people with SCI. The knowledge we gained from this pilot study informed improvements that were made in the full randomized controlled trial. ", doi="10.2196/24276", url="https://rehab.jmir.org/2021/2/e24276", url="http://www.ncbi.nlm.nih.gov/pubmed/34106086" } @Article{info:doi/10.2196/22960, author="Liu, Ting and Xie, Sumei and Wang, Yingmin and Tang, Jie and He, Xiaokuo and Yan, Tiebin and Li, Kun", title="Effects of App-Based Transitional Care on the Self-Efficacy and Quality of Life of Patients With Spinal Cord Injury in China: Randomized Controlled Trial", journal="JMIR Mhealth Uhealth", year="2021", month="Apr", day="1", volume="9", number="4", pages="e22960", keywords="spinal cord injury", keywords="mobile app", keywords="transitional care", keywords="self-efficacy", keywords="quality of life", abstract="Background: Spinal cord injury (SCI) severely impairs the physical and mental health of patients, decreasing their self-efficacy in coping with daily life and quality of life (QOL). In China, a large gap remains between the complex long-term health needs of SCI patients and the current community care system. With the prevalence of mobile terminals, the usage of mobile health apps has the potential to fill this gap by extending qualified medical resources to the families of SCI patients. Our team developed the app Together for the transitional care of home-dwelling SCI patients in China. Objective: This study aimed to evaluate the effects of app-based transitional care on the self-efficacy and QOL of SCI patients. Methods: Through a three-round Delphi process, an Android app was designed. Both medical staff and patients could access the app. Medical staff used it for providing remote transitional care to SCI patients. Patients used it to view transitional care time and send messages to medical staff. Thereafter, a multicenter and assessor-blinded randomized controlled trial was conducted. Participants (n=98) who had SCI and lived at home following discharge were recruited and randomly assigned to a study group (n=49) and control group (n=49) using a randomized number list in four research centers. Patients in both groups received systematic discharge education before discharge. The study group received five follow-ups conducted by trained nurses through the app, which had four core functions, namely remote assessment, health education, interdisciplinary referral, and patient interaction, at weeks 2, 4, 6, 8, and 12 following discharge. The control group received a routine telephone follow-up conducted by nurses at week 12 following discharge. The outcome measures were the Moorong Self-Efficacy Scale (MSES) and 36-item Short-Form Health Survey (SF-36) scores. Data were collected before discharge (T0) and at weeks 12 (T1) and 24 following discharge (T2). Differences between the groups were tested by repeated measures analysis of variance and simple effect analysis. Results: After the follow-up, the total MSES scores in the study group improved over time (T0=67.80, T1=71.90, and T2=76.29) and were higher than those in the control group (T2=64.49) at 24 weeks following discharge (simple effect analysis: F1=8.506, P=.004). Regarding the total SF-36 score, although it was higher in patients from the study group (T2=65.36) than those from the control group (T2=58.77) at 24 weeks following discharge, only time effects were significant (F2,95=6.671, P=.002) and neither the group effects nor the interaction effects influenced the change in QOL (group effects: F1,96=0.082, P=.78; interaction effects: F2,95=3.059, P=.052). Conclusions: This study confirmed that app-based transitional care improves the self-efficacy of SCI patients. Nevertheless, QOL improvement is not yet evident. Future investigations with larger sample sizes and longer observation periods are warranted to further verify the effects. Trial Registration: Chinese Clinical Trial Registry ChiCTR-IPR-17012317; http://www.chictr.org.cn/showproj.aspx?proj=19828 ", doi="10.2196/22960", url="https://mhealth.jmir.org/2021/4/e22960", url="http://www.ncbi.nlm.nih.gov/pubmed/33792555" } @Article{info:doi/10.2196/28256, author="Perrin, B. Paul and McDonald, D. Scott and Watson, D. Jack and Pierce, S. Bradford and Elliott, R. Timothy", title="Telehealth Transition Assistance Program for Acute Spinal Cord Injury Caregivers: Protocol for a Mixed-Methods, Randomized Controlled Trial", journal="JMIR Res Protoc", year="2021", month="Mar", day="29", volume="10", number="3", pages="e28256", keywords="spinal cord injury", keywords="telehealth", keywords="caregiver", keywords="methodology", abstract="Background: While spinal cord injury (SCI) caregiving can be a rewarding experience, caregivers often experience reduced mental and physical health. Objective: This article describes the methodology of a study examining the efficacy of a newly developed telehealth Transition Assistance Program (TAP) for caregivers of individuals with acute SCI. Methods: A mixed-methods, randomized controlled trial is comparing TAP outcomes to that of a standard-of-care control. The study is recruiting for 48 months and incorporating quantitative outcome measures. Results: This study was funded by the Craig H. Neilsen Foundation in April 2017. It was approved by the institutional review boards at Virginia Commonwealth University and the Hunter Holmes McGuire Veterans Affairs Medical Center that same year. Participant recruitment and data collection began in 2018. Conclusions: This study is implementing and testing an SCI caregiver intervention unlike any created before, targeting a critical time period that, until now, other SCI caregiver interventions have overlooked. Research personnel intend to disseminate the intervention and study findings through the publication of manuscripts and presentations at conferences. If the current study shows improvements in caregiver or patient well-being, the TAP for SCI caregivers could become part of the standard of care for acute SCI. Trial Registration: ClinicalTrials.gov NCT03244098; https://www.clinicaltrials.gov/ct2/show/NCT03244098 International Registered Report Identifier (IRRID): DERR1-10.2196/28256 ", doi="10.2196/28256", url="https://www.researchprotocols.org/2021/3/e28256", url="http://www.ncbi.nlm.nih.gov/pubmed/33779569" } @Article{info:doi/10.2196/22659, author="Van de Winckel, Ann and Nawshin, Tanjila and Byron, Casey", title="Combining a Hudl App With Telehealth to Increase Home Exercise Program Adherence in People With Chronic Diseases Experiencing Financial Distress: Randomized Controlled Trial", journal="JMIR Form Res", year="2021", month="Mar", day="18", volume="5", number="3", pages="e22659", keywords="chronic disease", keywords="spinal cord injury", keywords="stroke", keywords="telehealth", keywords="telemedicine", keywords="traumatic brain injury", abstract="Background: Patients with chronic diseases often need to adhere to long-term individualized home exercise programs (HEPs). Limited adherence to long-term exercise given during physical therapy (PT) visits reduces the capacity of exercise to manage or improve symptoms related to chronic disease. In addition, a lower socioeconomic status negatively impacts exercise adherence. To mitigate this, apps that motivate people to exercise could be a viable option. Using an app through telehealth may help adults with chronic diseases to achieve long-term HEP adherence. However, because apps for rehabilitation are an emerging field, the feasibility of the app needs to be evaluated. Objective: To address HEP adherence in participants with chronic diseases who are experiencing financial distress, we aim to evaluate the feasibility of and satisfaction with the Hudl Technique app and telehealth and satisfaction with PT care and to monitor HEP adherence and compliance (ie, percentage of participant-recorded videos sent) in participants using the app with telehealth compared with those using standard HEPs on paper. Methods: We recruited patients scheduled for outpatient PT. We performed a randomized controlled trial in which the experimental group received weekly HEP demonstrations through app videos on a tablet with feedback on their self-recorded HEP video performance from the telehealth physical therapist. The control group received HEPs on paper without feedback, as is customary in PT practice. Demographic, clinical, and health coverage information was collected for screening and baseline measurements. Adherence and compliance were evaluated. Both groups completed surveys at 8 and 24 weeks on their satisfaction with PT care, and the experimental group also completed a survey on their satisfaction with the app with telehealth use. Descriptive and nonparametric statistics were used for within-group and between-group comparisons and analyzed with JMP, version 13. Results: Overall, 45 adults with chronic diseases who were experiencing financial distress were randomized into experimental (23/45, 51\%) and control (22/45, 49\%) groups, with 74\% (17/23) and 86\% (19/22) participants completing the 24-week HEP, respectively. The experimental group had an HEP adherence frequency of 4 (SD 2) to 5 (SD 2) times per week at 8 and 24 weeks (P=.14), whereas HEP adherence decreased in the control group from 4 (SD 2) to 3 (SD 2) times per week (P=.07), with a significant difference (P=.01) between groups at 24 weeks. Of the total participants, 68\% (15/22) sent videos. They sent 68\% (16/24) of the requested number of videos on average. The average score for PT care satisfaction was maintained at 87\% in the experimental group (P=.99), whereas it decreased from 89\% at 8 weeks to 74\% at 24 weeks (P=.008) in the control group. App-related adverse events were not observed. Conclusions: The Hudl app/telehealth platform is feasible for delivering HEPs and maintaining HEP adherence in participants with chronic diseases who are experiencing financial distress. Trial Registration: ClinicalTrials.gov NCT02659280; https://clinicaltrials.gov/ct2/show/NCT02659280 ", doi="10.2196/22659", url="https://formative.jmir.org/2021/3/e22659", url="http://www.ncbi.nlm.nih.gov/pubmed/33640865" } @Article{info:doi/10.2196/26443, author="Do Khac, Ariane and Jourdan, Claire and Fazilleau, Sylvain and Palayer, Claire and Laffont, Isabelle and Dupeyron, Arnaud and Verdun, St{\'e}phane and Gelis, Anthony", title="mHealth App for Pressure Ulcer Wound Assessment in Patients With Spinal Cord Injury: Clinical Validation Study", journal="JMIR Mhealth Uhealth", year="2021", month="Feb", day="23", volume="9", number="2", pages="e26443", keywords="mobile app", keywords="wound", keywords="pressure ulcer", keywords="assessment", keywords="validity", keywords="reliability", keywords="app", keywords="correlation", keywords="access", keywords="availability", keywords="reproducibility", abstract="Background: Clinical evaluation of a pressure ulcer is based on quantitative and qualitative evaluation. In clinical practice, acetate tracing is the standard technique used to measure wound surface area; however, it is difficult to use in daily practice (because of material availability, data storage issues, and time needed to calculate the surface area). Planimetry techniques developed with mobile health (mHealth) apps can be used to overcome these difficulties. Objective: The goal of this study was to evaluate the metrological properties of a free-access mHealth app, called imitoMeasure, to assess pressure ulcers. Methods: This was a noninterventional, validation study. We included patients with spinal cord injury presenting with a pressure ulcer, regardless of its stage or location. We performed wound measurements with a ruler, and we performed acetate tracing using a transparent dressing with a wound measurement grid. Wound evaluation via the mHealth app was conducted twice by the main investigator and also by a coinvestigator to determine validity, intrarater reproducibility, and interrater reproducibility. Bland-Altman plots and intraclass correlation coefficients were used to compute the minimal detectable change percentage. Results: Overall, 61 different pressure ulcers were included. The validity, intrarater reproducibility, and interrater reproducibility of the mHealth app vs acetate tracing (considered the method of reference) were good, with intraclass correlation coefficients of 0.97 (95\% CI 0.93-0.99), 0.99 (95\% CI 0.98-0.99), and 0.98 (95\% CI 0.96-0.99), respectively, and minimal detectable change percentages between 17\% and 35\%. Conclusions: The imitoMeasure app had good validity and reproducibility. It could be an alternative to standard wound assessment methods. Further studies on larger and more diverse wounds are needed. Trial Registration: ClinicalTrials.gov NCT04402398; http://clinicaltrials.gov/ct2/show/NCT04402398 ", doi="10.2196/26443", url="https://mhealth.jmir.org/2021/2/e26443", url="http://www.ncbi.nlm.nih.gov/pubmed/33620327" } @Article{info:doi/10.2196/24339, author="Hendriks, S. Maartje M. and van Lotringen, H. Jaap and Vos-van der Hulst, Marije and Keijsers, W. No{\"e}l L.", title="Bed Sensor Technology for Objective Sleep Monitoring Within the Clinical Rehabilitation Setting: Observational Feasibility Study", journal="JMIR Mhealth Uhealth", year="2021", month="Feb", day="8", volume="9", number="2", pages="e24339", keywords="continuous sleep monitoring device", keywords="bed sensor technology", keywords="mHealth", keywords="nocturnal heart rate", keywords="nocturnal respiratory rate", keywords="nocturnal movement activity", keywords="neurological disorders", keywords="incomplete spinal cord injury", keywords="stroke", keywords="inpatient rehabilitation", keywords="clinical application", abstract="Background: Since adequate sleep is essential for optimal inpatient rehabilitation, there is an increased interest in sleep assessment. Unobtrusive, contactless, portable bed sensors show great potential for objective sleep analysis. Objective: The aim of this study was to investigate the feasibility of a bed sensor for continuous sleep monitoring overnight in a clinical rehabilitation center. Methods: Patients with incomplete spinal cord injury (iSCI) or stroke were monitored overnight for a 1-week period during their in-hospital rehabilitation using the Emfit QS bed sensor. Feasibility was examined based on missing measurement nights, coverage percentages, and missing periods of heart rate (HR) and respiratory rate (RR). Furthermore, descriptive data of sleep-related parameters (nocturnal HR, RR, movement activity, and bed exits) were reported. Results: In total, 24 participants (12 iSCI, 12 stroke) were measured. Of the 132 nights, 5 (3.8\%) missed sensor data due to Wi-Fi (2), slipping away (1), or unknown (2) errors. Coverage percentages of HR and RR were 97\% and 93\% for iSCI and 99\% and 97\% for stroke participants. Two-thirds of the missing HR and RR periods had a short duration of ?120 seconds. Patients with an iSCI had an average nocturnal HR of 72 (SD 13) beats per minute (bpm), RR of 16 (SD 3) cycles per minute (cpm), and movement activity of 239 (SD 116) activity points, and had 86 reported and 84 recorded bed exits. Patients with a stroke had an average nocturnal HR of 61 (SD 8) bpm, RR of 15 (SD 1) cpm, and movement activity of 136 (SD 49) activity points, and 42 reported and 57 recorded bed exits. Patients with an iSCI had significantly higher nocturnal HR (t18=?2.1, P=.04) and movement activity (t18=?1.2, P=.02) compared to stroke patients. Furthermore, there was a difference between self-reported and recorded bed exits per night in 26\% and 38\% of the nights for iSCI and stroke patients, respectively. Conclusions: It is feasible to implement the bed sensor for continuous sleep monitoring in the clinical rehabilitation setting. This study provides a good foundation for further bed sensor development addressing sleep types and sleep disorders to optimize care for rehabilitants. ", doi="10.2196/24339", url="http://mhealth.jmir.org/2021/2/e24339/", url="http://www.ncbi.nlm.nih.gov/pubmed/33555268" } @Article{info:doi/10.2196/18732, author="Khan, Zaman Danyal and Fitzpatrick, Mairead Siobhan and Hilton, Bryn and McNair, GK Angus and Sarewitz, Ellen and Davies, Marshall Benjamin and Kotter, RN Mark and ", title="Prevailing Outcome Themes Reported by People With Degenerative Cervical Myelopathy: Focus Group Study", journal="JMIR Form Res", year="2021", month="Feb", day="3", volume="5", number="2", pages="e18732", keywords="cervical", keywords="myelopathy", keywords="spondylosis", keywords="spondylotic", keywords="stenosis", keywords="disc herniation", keywords="ossification posterior longitudinal ligament", keywords="qualitative", keywords="thematic analysis", keywords="core outcomes set", keywords="consensus", keywords="Delphi", keywords="patient perspectives", abstract="Background: Degenerative cervical myelopathy (DCM) arises when arthritic changes of the cervical spine cause compression and a progressive injury to the spinal cord. It is common and potentially disabling. People with DCM have among the lowest quality of life scores (Short Form Health Survey--36 item [SF-36]) of chronic disease, although the drivers of the imapact of DCM are not entirely understood. DCM research faces a number of challenges, including the heterogeneous reporting of study data. The AO Spine Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy (RECODE-DCM) project is an international consensus process that aims to improve research efficiency through formation of a core outcome set (COS). A key part of COS development process is organizing outcomes into domains that represent key aspects of the disease. To facilitate this, we sought to qualitatively explore the context and impact of patient-reported outcomes in DCM on study participants. Objective: The goal of the research was to qualitatively explore the patient-reported outcomes in DCM to improve understanding of patient perspective and assist the organization of outcomes into domains for the consensus process. Methods: Focus group sessions were hosted in collaboration with Myelopathy.org, a charity and support group for people with DCM. A 40-minute session was audiorecorded and transcribed verbatim. Two authors familiarized themselves with the data and then performed data coding independently. Codes were grouped into themes and a thematic analysis was performed guided by Braun and Clarke's 6-phase approach. The themes were subsequently reviewed with an independent stakeholder with DCM, assisting in the process of capturing the true context and importance of themes. Results: Five people with DCM (3 men and 2 women) participated in the focus group session. The median age was 53 years, and the median score on the modified Japanese Orthopaedic Association scale was 11 (interquartile range 9.5-11.5), indicating the participants had moderate to severe DCM. A total of 54 codes were reviewed and grouped into 10 potential themes that captured the impact of the disability on people with DCM: acceptance of symptoms, anticipatory anxiety, coping mechanisms/resilience, feelings of helplessness, financial consequences, lack of recognition, mental health impact, loss of life control, social reclusiveness and isolation, and social stigma. Conclusions: This qualitative analysis of the perspectives of people with DCM has highlighted a number of prevailing themes currently unmeasured in clinical research or care. The determinants of low quality of life in DCM are currently unknown, and these findings provide a novel and so far, unique perspective. Continued inclusion of online communities and use of targeted digital software will be important in establishing a consensus-based COS for patients with DCM that is inclusive of all relevant stakeholders including people with DCM. ", doi="10.2196/18732", url="https://formative.jmir.org/2021/2/e18732", url="http://www.ncbi.nlm.nih.gov/pubmed/33533719" } @Article{info:doi/10.2196/16054, author="Enciso, James and Variya, Dhruval and Sunthonlap, James and Sarmiento, Terrence and Lee, Mun Ka and Velasco, James and Pebdani, N. Roxanna and de Leon, D. Ray and Dy, Christine and Keslacy, Stefan and Won, Soonmee Deborah", title="Electromyography-Driven Exergaming in Wheelchairs on a Mobile Platform: Bench and Pilot Testing of the WOW-Mobile Fitness System", journal="JMIR Rehabil Assist Technol", year="2021", month="Jan", day="19", volume="8", number="1", pages="e16054", keywords="exergaming", keywords="gamercising", keywords="mobile health", keywords="wheelchair exercises", keywords="wireless electromyography", keywords="mobile phone", abstract="Background: Implementing exercises in the form of video games, otherwise known as exergaming, has gained recent attention as a way to combat health issues resulting from sedentary lifestyles. However, these exergaming apps have not been developed for exercises that can be performed in wheelchairs, and they tend to rely on whole-body movements. Objective: This study aims to develop a mobile phone app that implements electromyography (EMG)-driven exergaming, to test the feasibility of using this app to enable people in wheelchairs to perform exergames independently and flexibly in their own home, and to assess the perceived usefulness and usability of this mobile health system. Methods: We developed an Android mobile phone app (Workout on Wheels, WOW-Mobile) that senses upper limb muscle activity (EMG) from wireless body-worn sensors to drive 3 different video games that implement upper limb exercises designed for people in wheelchairs. Cloud server recordings of EMG enabled long-term monitoring and feedback as well as multiplayer gaming. Bench testing of data transmission and power consumption were tested. Pilot testing was conducted on 4 individuals with spinal cord injury. Each had a WOW-Mobile system at home for 8 weeks. We measured the minutes for which the app was used and the exergames were played, and we integrated EMG as a measure of energy expended. We also conducted a perceived usefulness and usability questionnaire. Results: Bench test results revealed that the app meets performance specifications to enable real-time gaming, cloud storage of data, and live cloud server transmission for multiplayer gaming. The EMG sampling rate of 64 samples per second, in combination with zero-loss data communication with the cloud server within a 10-m range, provided seamless control over the app exergames and allowed for offline data analysis. Each participant successfully used the WOW-Mobile system at home for 8 weeks, using the app for an average of 146 (range 89-267) minutes per week with the system, actively exergaming for an average of 53\% of that time (39\%-59\%). Energy expenditure, as measured by integrated EMG, was found to be directly proportional to the time spent on the app (Pearson correlation coefficient, r=0.57-0.86, depending on the game). Of the 4 participants, 2 did not exercise regularly before the study; these 2 participants increased from reportedly exercising close to 0 minutes per week to exergaming 58 and 158 minutes on average using the WOW-Mobile fitness system. The perceived usefulness of WOW-Mobile in motivating participants to exercise averaged 4.5 on a 5-point Likert scale and averaged 5 for the 3 participants with thoracic level injuries. The mean overall ease of use score was 4.25 out of 5. Conclusions: Mobile app exergames driven by EMG have promising potential for encouraging and facilitating fitness for individuals in wheelchairs who have maintained arm and hand mobility. ", doi="10.2196/16054", url="http://rehab.jmir.org/2021/1/e16054/", url="http://www.ncbi.nlm.nih.gov/pubmed/33464221" } @Article{info:doi/10.2196/22452, author="Amann, Julia and Fiordelli, Maddalena and Scheel-Sailer, Anke and Brach, Mirjam and Rubinelli, Sara", title="Opportunities and Challenges of a Self-Management App to Support People With Spinal Cord Injury in the Prevention of Pressure Injuries: Qualitative Study", journal="JMIR Mhealth Uhealth", year="2020", month="Dec", day="9", volume="8", number="12", pages="e22452", keywords="mHealth", keywords="eHealth", keywords="self-management", keywords="spinal cord injury", keywords="pressure injury", keywords="prevention", keywords="technology acceptance", abstract="Background: Mobile health applications can offer tailored self-management support to individuals living with chronic health conditions. However, there are several challenges to the adoption of these technologies in practice. Co-design is a promising approach to overcoming some of these challenges by enabling the development of solutions that meet the actual needs and preferences of the relevant stakeholder groups. Objective: Taking spinal cord injury as a case in point, the overall objectives of this study were to identify the perceived benefits of a co-designed self-management app that could promote its uptake and to explore the factors that may impede adoption. Methods: We adopted a qualitative research approach guided by the Technology Acceptance Model. Data were collected through semistructured interviews with individuals with spinal cord injury (n=15) and two focus groups with health care professionals specialized in spinal cord injury (n=7, n=5). Prior to the interviews and focus groups, study participants were given time to explore the app prototype. All interviews were transcribed verbatim and analyzed using inductive thematic analysis. Results: Findings of our analysis indicate that study participants perceived the app prototype as potentially useful for supporting individuals with spinal cord injury in preventing pressure injuries. In particular, we identified three concrete use cases highlighting the benefits of the app for different audiences: (1) a companion for newly injured individuals, (2) an emergency kit and motivational support, and 3) a guide for informal caregivers and family members. We also uncovered several challenges that might impede the adoption of the self-management app in practice, including (1) challenges in motivating individuals to use the app, (2) concerns about the misuse and abuse of the app, and (3) organizational and maintenance challenges. Conclusions: This study adds to a growing body of research that investigates individuals' adoption and nonadoption behavior regarding mobile health solutions. Building on earlier work, we make recommendations on how to address the barriers to the adoption of mobile health solutions identified by this study. In particular, there is a need to foster trust in mobile health among prospective users, including both patients and health care professionals. Moreover, increasing personal relevance of mobile health solutions through personalization may be a promising approach to promote uptake. Last but not least, organizational support also plays an instrumental role in mobile health adoption. We conclude that even though co-design is promoted as a promising approach to develop self-management tools, co-design does not guarantee adoption. More research is needed to identify the most promising strategies to promote the adoption of evidence-based mobile health solutions in practice. ", doi="10.2196/22452", url="http://mhealth.jmir.org/2020/12/e22452/", url="http://www.ncbi.nlm.nih.gov/pubmed/33295876" } @Article{info:doi/10.2196/20723, author="Jia, Mengmeng and Tang, Jie and Xie, Sumei and He, Xiaokuo and Wang, Yingmin and Liu, Ting and Yan, Tiebin and Li, Kun", title="Using a Mobile App-Based International Classification of Functioning, Disability, and Health Set to Assess the Functioning of Spinal Cord Injury Patients: Rasch Analysis", journal="JMIR Mhealth Uhealth", year="2020", month="Nov", day="11", volume="8", number="11", pages="e20723", keywords="International Classification of Functioning, Disability and Health", keywords="spinal cord injuries", keywords="mobile health app", keywords="Rasch analysis", abstract="Background: The International Classification of Functioning, Disability, and Health (ICF) is a unified system of functioning terminology that has been used to develop electronic health records and assessment instruments. Its application has been limited, however, by its complex terminology, numerous categories, uncertain operationalization, and the training required to use it well. Together is a mobile health app designed to extend medical support to the families of spinal cord injury (SCI) patients in China. The app's core framework is a set of only 31 ICF categories. The app also provides rating guidelines and automatically transforms routine assessment results to the terms of the ICF qualifiers. Objective: The goal of the research is to examine the suitability of the ICF set used in the app Together for use as an instrument for assessing the functioning of SCI patients. Methods: A cross-sectional study was conducted including 112 SCI patients recruited before discharge from four rehabilitation centers in China between May 2018 and October 2019. Nurses used the app to assess patient functioning in face-to-face interviews. The resulting data were then subjected to Rasch analysis. Results: After deleting two categories (family relationships and socializing) and one personal factor (knowledge about spinal cord injury) that did not fit the Rasch model, the body functions and body structures, activities and participation, and contextual factors components of the ICF exhibited adequate fit to the Rasch model. All three demonstrated acceptable person separation indices. The 28 categories retained in the set were free of differential item functioning by gender, age, education level, or etiology. Conclusions: Together overcomes some of the obstacles to practical application of the ICF. The app is a reliable assessment tool for assessing functioning after spinal cord injury. ", doi="10.2196/20723", url="https://mhealth.jmir.org/2020/11/e20723", url="http://www.ncbi.nlm.nih.gov/pubmed/33174860" } @Article{info:doi/10.2196/20979, author="Hesam-Shariati, Negin and Newton-John, Toby and Singh, K. Avinash and Tirado Cortes, A. Carlos and Do, Nguyen Tien-Thong and Craig, Ashley and Middleton, W. James and Jensen, P. Mark and Trost, Zina and Lin, Chin-Teng and Gustin, M. Sylvia", title="Evaluation of the Effectiveness of a Novel Brain-Computer Interface Neuromodulative Intervention to Relieve Neuropathic Pain Following Spinal Cord Injury: Protocol for a Single-Case Experimental Design With Multiple Baselines", journal="JMIR Res Protoc", year="2020", month="Sep", day="29", volume="9", number="9", pages="e20979", keywords="EEG neurofeedback", keywords="neuropathic pain", keywords="spinal cord injury", keywords="thalamus", keywords="serious games", keywords="brain-machine interface", keywords="brain-computer interface", keywords="single-case experimental design", abstract="Background: Neuropathic pain is a debilitating secondary condition for many individuals with spinal cord injury. Spinal cord injury neuropathic pain often is poorly responsive to existing pharmacological and nonpharmacological treatments. A growing body of evidence supports the potential for brain-computer interface systems to reduce spinal cord injury neuropathic pain via electroencephalographic neurofeedback. However, further studies are needed to provide more definitive evidence regarding the effectiveness of this intervention. Objective: The primary objective of this study is to evaluate the effectiveness of a multiday course of a brain-computer interface neuromodulative intervention in a gaming environment to provide pain relief for individuals with neuropathic pain following spinal cord injury. Methods: We have developed a novel brain-computer interface-based neuromodulative intervention for spinal cord injury neuropathic pain. Our brain-computer interface neuromodulative treatment includes an interactive gaming interface, and a neuromodulation protocol targeted to suppress theta (4-8 Hz) and high beta (20-30 Hz) frequency powers, and enhance alpha (9-12 Hz) power. We will use a single-case experimental design with multiple baselines to examine the effectiveness of our self-developed brain-computer interface neuromodulative intervention for the treatment of spinal cord injury neuropathic pain. We will recruit 3 participants with spinal cord injury neuropathic pain. Each participant will be randomly allocated to a different baseline phase (ie, 7, 10, or 14 days), which will then be followed by 20 sessions of a 30-minute brain-computer interface neuromodulative intervention over a 4-week period. The visual analog scale assessing average pain intensity will serve as the primary outcome measure. We will also assess pain interference as a secondary outcome domain. Generalization measures will assess quality of life, sleep quality, and anxiety and depressive symptoms, as well as resting-state electroencephalography and thalamic $\gamma$-aminobutyric acid concentration. Results: This study was approved by the Human Research Committees of the University of New South Wales in July 2019 and the University of Technology Sydney in January 2020. We plan to begin the trial in October 2020 and expect to publish the results by the end of 2021. Conclusions: This clinical trial using single-case experimental design methodology has been designed to evaluate the effectiveness of a novel brain-computer interface neuromodulative treatment for people with neuropathic pain after spinal cord injury. Single-case experimental designs are considered a viable alternative approach to randomized clinical trials to identify evidence-based practices in the field of technology-based health interventions when recruitment of large samples is not feasible. Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12620000556943; https://bit.ly/2RY1jRx International Registered Report Identifier (IRRID): PRR1-10.2196/20979 ", doi="10.2196/20979", url="http://www.researchprotocols.org/2020/9/e20979/", url="http://www.ncbi.nlm.nih.gov/pubmed/32990249" } @Article{info:doi/10.2196/19251, author="Bass, Alec and Aubertin-Leheudre, Myl{\`e}ne and Vincent, Claude and Karelis, D. Antony and Morin, N. Suzanne and McKerral, Michelle and Duclos, Cyril and Gagnon, H. Dany", title="Effects of an Overground Walking Program With a Robotic Exoskeleton on Long-Term Manual Wheelchair Users With a Chronic Spinal Cord Injury: Protocol for a Self-Controlled Interventional Study", journal="JMIR Res Protoc", year="2020", month="Sep", day="24", volume="9", number="9", pages="e19251", keywords="assistive technology", keywords="locomotion", keywords="spinal cord injury", keywords="rehabilitation", keywords="robotics", keywords="osteoporosis", abstract="Background: In wheelchair users with a chronic spinal cord injury (WUSCI), prolonged nonactive sitting time and reduced physical activity---typically linked to this mode of mobility---contribute to the development or exacerbation of cardiorespiratory, musculoskeletal, and endocrine-metabolic health complications that are often linked to increased risks of chronic pain or psychological morbidity. Limited evidence suggests that engaging in a walking program with a wearable robotic exoskeleton may be a promising physical activity intervention to counter these detrimental health effects. Objective: This study's overall goals are as follows: (1) to determine the effects of a 16-week wearable robotic exoskeleton--assisted walking program on organic systems, functional capacities, and multifaceted psychosocial factors and (2) to determine self-reported satisfaction and perspectives with regard to the intervention and the device. Methods: A total of 20 WUSCI, who have had their injuries for more than 18 months, will complete an overground wearable robotic exoskeleton--assisted walking program (34 sessions; 60 min/session) supervised by a physiotherapist over a 16-week period (one to three sessions/week). Data will be collected 1 month prior to the program, at the beginning, and at the end as well as 2 months after completing the program. Assessments will characterize sociodemographic characteristics; anthropometric parameters; sensorimotor impairments; pain; lower extremity range of motion and spasticity; wheelchair abilities; cardiorespiratory fitness; upper extremity strength; bone architecture and mineral density at the femur, tibia, and radius; total and regional body composition; health-related quality of life; and psychological health. Interviews and an online questionnaire will be conducted to measure users' satisfaction levels and perspectives at the end of the program. Differences across measurement times will be verified using appropriate parametric or nonparametric analyses of variance for repeated measures. Results: This study is currently underway with active recruitment in Montr{\'e}al, Qu{\'e}bec, Canada. Results are expected in the spring of 2021. Conclusions: The results from this study will be essential to guide the development, implementation, and evaluation of future evidence-based wearable robotic exoskeleton--assisted walking programs offered in the community, and to initiate a reflection regarding the use of wearable robotic exoskeletons during initial rehabilitation following a spinal cord injury. Trial Registration: ClinicalTrials.gov NCT03989752; https://clinicaltrials.gov/ct2/show/NCT03989752 International Registered Report Identifier (IRRID): DERR1-10.2196/19251 ", doi="10.2196/19251", url="http://www.researchprotocols.org/2020/9/e19251/", url="http://www.ncbi.nlm.nih.gov/pubmed/32663160" } @Article{info:doi/10.2196/16351, author="Allin, Sonya and Shepherd, John and Thorson, Teri and Tomasone, Jennifer and Munce, Sarah and Linassi, Gary and McBride, B. Christopher and Jiancaro, Tizneem and Jaglal, Susan", title="Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation", journal="JMIR Rehabil Assist Technol", year="2020", month="Jul", day="31", volume="7", number="2", pages="e16351", keywords="community-based participatory research", keywords="spinal cord injury", keywords="self-management", keywords="motivational interviewing", keywords="internet-based intervention", abstract="Background: Individuals with spinal cord injury (SCI) are at high risk of experiencing secondary conditions like pressure injuries. Self-management programs may reduce the risk of complications, but traditional programs have proven to be insufficiently tailored to the needs of people with SCI. To overcome barriers to self-management support, a web-based, self-management program was developed for Canadians with SCI called SCI \& U. Objective: This study aims to evaluate the feasibility and potential impact of the SCI \& U program in the context of a mixed methods pilot study. Methods: The study followed an explanatory, sequential mixed methods design. Participants (N=11) were Canadians with SCI who had been living in the community for more than 1 year. Each took part in a self-paced, six-session self-management program guided by a trained peer health coach. During sessions, participants could discuss a health topic with their coach from a predefined list (eg, skin or bowel management). Quantitative data were gathered before and after program participation to assess program feasibility and impact. Feasibility measures included attrition rates, frequency of topics selected, and recorded goals, whereas impact measures included measures of self-efficacy (University of Washington Self-Efficacy Scale [UW-SES]), mood (Personal Health Questionnaire Depression Scale [PHQ-8]), secondary conditions (Spinal Cord Injury Secondary Conditions Scale [SCI-SCS]), and resilience (Spinal Cord Injury Quality of Life Resilience Scale [SCI-QOL-R]). Qualitative measures were based on postintervention interviews; these were designed to confirm and expand on quantitative Results: Of the 11 participants, 10 completed pre- and postassessments, and 6 coaching sessions. Sessions lasted between 31 and 81 min (average 55, SD 13), and the duration of the program ranged from 35 to 88 days (average 56, SD 23). Diet and exercise were selected as topics 40\% (20/50 sessions with topics) of the time, whereas topics such as mental health, bladder management, pain, and bowel management were chosen less frequently. Results gathered before and after the pilot study demonstrated improvements with moderate effect sizes on the UW-SES and the electronic health literacy scale (ie, Hedges g>0.5). Effect sizes for measures of resilience (SCI-QOL-R), depression (PHQ-8), and secondary conditions (SCI-SCS) were small (ie, Hedges g>0.3). Qualitative results confirmed a common focus on diet and exercise, and defined coaches as sources of accountability, information, reassurance and affirmation, and emotional and technical support. Conclusions: Results demonstrated that a web-based self-management program is feasible and acceptable by Canadians with SCI. Results also indicated a web-based, peer-led self-management program may impact resilience, self-efficacy, mood, and secondary complications. Finally, results illuminated the role of the coach in facilitating behavior change. Future work seeks to validate results in the context of a randomized controlled trial. ", doi="10.2196/16351", url="http://rehab.jmir.org/2020/2/e16351/", url="http://www.ncbi.nlm.nih.gov/pubmed/32589148" } @Article{info:doi/10.2196/18018, author="Amann, Julia and Fiordelli, Maddalena and Brach, Mirjam and Bertschy, Sue and Scheel-Sailer, Anke and Rubinelli, Sara", title="Co-designing a Self-Management App Prototype to Support People With Spinal Cord Injury in the Prevention of Pressure Injuries: Mixed Methods Study", journal="JMIR Mhealth Uhealth", year="2020", month="Jul", day="9", volume="8", number="7", pages="e18018", keywords="co-design", keywords="mHealth", keywords="eHealth", keywords="self-management", keywords="spinal cord injury", keywords="pressure injury", abstract="Background: Spinal cord injury is a complex chronic health condition that requires individuals to actively self-manage. Therefore, an evidence-based, self-management app would be of value to support individuals with spinal cord injury in the prevention of pressure injuries. Objective: The main objectives of this study were to (1) establish a co-design approach for developing a high-fidelity prototype app for the self-management of individuals with spinal cord injury, (2) design the prototype that resulted from this process, and (3) conduct the first usability assessment of the prototype app. Methods: We adopted a co-design approach to develop an evidence-based app prototype. Starting from a preliminary content model (based on clinical guidelines for the prevention of pressure injuries) and three research-based user personas, we conducted an ideation workshop involving individuals with spinal cord injury and health care professionals. The ideation workshop formed the basis for two consecutive design sprints. The result of this co-design phase was an interactive app prototype. The prototype was evaluated in two rounds of usability testing (N=4 and N=15, respectively) using a combination of qualitative and quantitative methods. Results: The co-design process resulted in a high-fidelity prototype with two key components: a self-management component and a communication component. The final prototype included a combination of features to support individuals with spinal cord injury in the prevention of pressure injuries, namely a smart camera, pressure injury diary, expert consultation, reminders, and knowledge repository. Findings of the usability testing showed that most participants navigated the app fluently with little back and forth navigation and were able to successfully complete a set of assigned tasks. These positive results are supported by the average system usability score achieved (78.5/100; range 47.5-95.0) and our qualitative analysis of the semistructured interviews. Despite an overall positive evaluation of the app prototype, we identified areas for improvement (eg, inclusion of a search function). Conclusions: Individuals with spinal cord injury often need to navigate competing interests and priorities, paired with uncertainty about the accuracy and relevance of clinical recommendations. Understanding what matters to individuals with spinal cord injury can help guide the design of behavioral interventions that are useful and acceptable to these individuals in their daily lives. This study shows that involving individuals with spinal cord injury and health care professionals in co-designing a self-management app can foster knowledge cocreation at the intersection of lived experience, medical expertise, and technical solutions. ", doi="10.2196/18018", url="https://mhealth.jmir.org/2020/7/e18018", url="http://www.ncbi.nlm.nih.gov/pubmed/32673241" } @Article{info:doi/10.2196/15818, author="Fiordelli, Maddalena and Zanini, Claudia and Amann, Julia and Scheel-Sailer, Anke and Brach, Mirjam and Stucki, Gerold and Rubinelli, Sara", title="Selecting Evidence-Based Content for Inclusion in Self-Management Apps for Pressure Injuries in Individuals With Spinal Cord Injury: Participatory Design Study", journal="JMIR Mhealth Uhealth", year="2020", month="May", day="20", volume="8", number="5", pages="e15818", keywords="mHealth", keywords="paraplegia", keywords="tetraplegia", keywords="pressure ulcers", keywords="consensus meeting", keywords="community engagement", keywords="recommendations", abstract="Background: Technological solutions, particularly mobile health (mHealth), have been shown to be potentially viable approaches for sustaining individuals' self-management of chronic health conditions. Theory-based interventions are more successful, as evidence-based information is an essential prerequisite for appropriate self-management. However, several reviews have shown that many existing mobile apps fail to be either theoretically grounded or based on evidence. Although some authors have attempted to address these two issues by focusing on the design and development processes of apps, concrete efforts to systematically select evidence-based content are scant. Objective: The objective of this study was to present a procedure for the participatory identification of evidence-based content to ground the development of a self-management app. Methods: To illustrate the procedure, we focused on the prevention and management of pressure injuries (PIs) in individuals with spinal cord injury (SCI). The procedure involves the following three steps: (1) identification of existing evidence through review and synthesis of existing recommendations on the prevention and self-management of PIs in SCI; (2) a consensus meeting with experts from the field of SCI and individuals with SCI to select the recommendations that are relevant and applicable to community-dwelling individuals in their daily lives; and (3) consolidation of the results of the study. Results: In this case study, at the end of the three-step procedure, the content for an mHealth intervention was selected in the form of 98 recommendations. Conclusions: This study describes a procedure for the participatory identification and selection of disease-specific evidence and professional best practices to inform self-management interventions. This procedure might be especially useful in cases of complex chronic health conditions, as every recommendation in these cases needs to be evaluated and considered in light of all other self-management requirements. Hence, the agreement of experts and affected individuals is essential to ensure the selection of evidence-based content that is considered to be relevant and applicable. ", doi="10.2196/15818", url="http://mhealth.jmir.org/2020/5/e15818/", url="http://www.ncbi.nlm.nih.gov/pubmed/32432559" } @Article{info:doi/10.2196/14051, author="Gibson-Gill, McMara Carol and Williams, Joyce and Fyffe, Denise", title="Triangle of Healthy Caregiving for Veterans With Spinal Cord Injury: Proposal for a Mixed Methods Study", journal="JMIR Res Protoc", year="2020", month="May", day="12", volume="9", number="5", pages="e14051", keywords="veterans health", keywords="spinal cord injury", keywords="telemedicine", keywords="telehealth", keywords="delivery of health care", keywords="virtual health", keywords="health services accessibility", keywords="quality of life", keywords="patient care team", keywords="caregivers", abstract="Background: Spinal cord injury (SCI) is a debilitating injury that results in chronic paralysis, impaired functioning, and drastically altered quality of life (QOL). The Department of Veterans Affairs (VA) estimates that approximately 450 newly injured veterans and active-duty members receive rehabilitation at VA's Spinal Cord Injury/Disorders Centers annually. VA virtual health services use technology and health informatics to provide veterans with better access and more effective care management. The ``Triangle of Healthy Caregiving for SCI Veterans'' is a patient-centered intervention that incorporates SCI veterans' caregivers into the VA SCI health care team and extends into the homes of veterans with SCI by using real-time clinical video teleconferencing (CVT). CVT facilitates video-clinic visits, which can include different types of clinical evaluations, therapy (physical/occupational), or psychosocial services. The ``Triangle of Healthy Caregiving for SCI Veterans'' builds on interactive, interdisciplinary health care relationships that exist between the veterans with SCI, their caregivers, and the VA SCI health care team. SCI veterans' propensity to multiple secondary complications makes a healthy partnership crucial for the success of keeping better health and functional outcomes as well as quality of life while living in their homes. Objective: The goal of the proposed mixed methods project will assess SCI veterans', their caregivers', and the VA health care team's perspectives and experiences in the ``Triangle of Healthy Caregiving for SCI Veterans'' to determine the benefits, challenges, and outcomes for everyone involved in the intervention. Methods: Data collection methods will be implemented over three sequential phases. First, in-depth interviews will be conducted with the telehealth coordinators to systematically document the administrative procedures involved in enrollment of veterans with SCI into the CVT system. Next, structured observation of the CVT enrollment process and logistics of home installation of the CVT system will be conducted to validate the content of the in-depth interviews and highlight any discrepancies observed. Semistructured interviews will be conducted to assess specific elements of the ``Triangle of Healthy Caregiving for SCI Veterans'' program, their perceived utility, and effectiveness of the CVT system as well as the general impressions of the impact of the intervention on the SCI veterans' health and function outcomes, caregiver burden, and daily caregiver burden. Finally, the research team will conduct a focus group to evaluate the ways in which the ``Triangle of Healthy Caregiving for SCI Veterans'' is useful for health care delivery to veterans with SCI and support services to SCI caregivers. Results: This proposal was funded in July 2017. It was reviewed and received institutional review board approval in March 2018, and the project was started immediately after, in the same month. As of September 2019, we have completed Phases I and III and have recruited 52 subjects for Phase II. We are beginning the data analysis. The study is projected to be completed in late summer of 2020, and the expected results are to be published in the fall of 2020. Conclusions: The findings from this study will highlight the ways in which virtual health care technologies can be used to improve access to SCI specialized care for veterans and provide an estimation of the potential impact on clinical outcomes for veterans with SCI and their caregivers. International Registered Report Identifier (IRRID): DERR1-10.2196/14051 ", doi="10.2196/14051", url="https://www.researchprotocols.org/2020/5/e14051", url="http://www.ncbi.nlm.nih.gov/pubmed/32396130" } @Article{info:doi/10.2196/15060, author="Zhou, Leming and Saptono, Andi and Setiawan, Agus I. Made and Parmanto, Bambang", title="Making Self-Management Mobile Health Apps Accessible to People With Disabilities: Qualitative Single-Subject Study", journal="JMIR Mhealth Uhealth", year="2020", month="Jan", day="3", volume="8", number="1", pages="e15060", keywords="mobile app", keywords="self-management", keywords="accessibility", keywords="personalization", abstract="Background: Over the past decade, a large number of mobile health (mHealth) apps have been created to help individuals to better manage their own health. However, very few of these mHealth apps were specifically designed for people with disabilities, and only a few of them have been assessed for accessibility for people with disabilities. As a result, people with disabilities have difficulties using many of these mHealth apps. Objective: The objective of this study was to identify an approach that can be generally applied to improve the accessibility of mHealth apps. Methods: We recruited 5 study participants with a primary diagnosis of cerebral palsy or spinal cord injury. All the participants had fine motor impairment or lack of dexterity, and hence, they had difficulties using some mHealth apps. These 5 study participants were first asked to use multiple modules in the client app of a novel mHealth system (iMHere 2.0), during which their performance was observed. Interviews were conducted post use to collect study participants' desired accessibility features. These accessibility features were then implemented into the iMHere 2.0 client app as customizable options. The 5 participants were asked to use the same modules in the app again, and their performance was compared with that in the first round. A brief interview and a questionnaire were then performed at the end of the study to collect the 5 participants' comments and impression of the iMHere 2.0 app in general and of the customizable accessibility features. Results: Study results indicate that the study participants on their first use of the iMHere 2.0 client app experienced various levels of difficulty consistent with the severity of their lack of dexterity. Their performance was improved after their desired accessibility features were added into the app, and they liked the customizable accessibility features. These participants also expressed an interest in using this mHealth system for their health self-management tasks. Conclusions: The accessibility features identified in this study improved the accessibility of the mHealth app for people with dexterity issues. Our approach for improving mHealth app accessibility may also be applied to other mHealth apps to make those apps accessible to people with disabilities. ", doi="10.2196/15060", url="https://mhealth.jmir.org/2020/1/e15060", url="http://www.ncbi.nlm.nih.gov/pubmed/31899453" } @Article{info:doi/10.2196/13441, author="Cole, Maria and Froehlich-Grobe, Katherine and Driver, Simon and Shegog, Ross and McLaughlin, Jeffery", title="Website Redesign of a 16-Week Exercise Intervention for People With Spinal Cord Injury by Using Participatory Action Research", journal="JMIR Rehabil Assist Technol", year="2019", month="Dec", day="17", volume="6", number="2", pages="e13441", keywords="internet", keywords="exercise", keywords="intervention", keywords="spinal cord injury", keywords="community-based research", abstract="Background: People with spinal cord injury (SCI) are at higher risk for numerous preventable chronic conditions. Physical activity is a protective factor that can reduce this risk, yet those with SCI encounter barriers to activity and are significantly less likely to be active. Limited evidence supports approaches to promote increased physical activity for those with SCI. Objective: Building upon our previous theory- and evidence-based approach to increase participation in regular physical activity for those with SCI, this study aimed to use a participatory action research approach to translate a theory-based intervention to be delivered via the Web to individuals with SCI. Methods: A total of 10 individuals with SCI were invited to participate in consumer input meetings to provide the research team with iterative feedback on an initial website designed as a platform for delivering a theory-based exercise intervention. Results: A total of 7 individuals with SCI whose average age was 43.6 years (SD 13.4) and lived an average age of 12.5 years (SD 14.9) with SCI met on 2 occasions to provide their feedback of the website platform, both on the initial design and subsequently on the revamped site. Their iterative feedback resulted in redesigning the website content, format, and functionality as well as delivery of the intervention program. Conclusions: The substantially redesigned website offers an easier-to-navigate platform for people with SCI with greater functionality that delivers information using a module format with less text, short video segments, and presents more resources. Preliminary testing of the site is the next step. ", doi="10.2196/13441", url="http://rehab.jmir.org/2019/2/e13441/", url="http://www.ncbi.nlm.nih.gov/pubmed/31845902" } @Article{info:doi/10.2196/13560, author="Campeau-Vallerand, Charles and Michaud, Fran{\c{c}}ois and Routhier, Fran{\c{c}}ois and Archambault, S. Philippe and L{\'e}tourneau, Dominic and G{\'e}linas-Bronsard, Dominique and Auger, Claudine", title="Development of a Web-Based Monitoring System for Power Tilt-in-Space Wheelchairs: Formative Evaluation", journal="JMIR Rehabil Assist Technol", year="2019", month="Oct", day="26", volume="6", number="2", pages="e13560", keywords="wheelchairs", keywords="eHealth", keywords="health behavior", keywords="pressure ulcers", keywords="self-help devices", keywords="remote sensing technology", keywords="technology assessment", abstract="Background: In order to prevent pressure ulcers, wheelchair users are advised to regularly change position to redistribute or eliminate pressure between the buttocks region and the seat of the wheelchair. A power tilt-in-space wheelchair (allowing simultaneous pivoting of the seat and the backrest of the wheelchair toward the back or front) meets many clinical purposes, including pressure management, increased postural control, and pain management. However, there is a significant gap between the use of tilt as recommended by clinicians and its actual usage. A Web-based electronic health (eHealth) intervention, including a goal setting, monitoring, reminder, and feedback system of the use of power tilt-in-space wheelchairs was developed. The intervention incorporates behavior change principles to promote optimal use of tilt and to improve clinical postprocurement follow-up. Objective: This study aimed to conduct a formative evaluation of the intervention prototype to pinpoint the functionalities needed by end users, namely, power wheelchair users and clinicians. Methods: On the basis of an evaluation framework for Web-based eHealth interventions, semistructured interviews were conducted with power wheelchair users and clinicians. A content analysis was performed with a mix of emerging and a priori concepts. Results: A total of 5 users of power tilt-in-space wheelchairs and 5 clinicians who had experience in the field of mobility aids aged 23 to 55 years were recruited. Participants found the Web interface and the physical components easy to use. They also appreciated the reminder feature that encourages the use of the tilt-in-space and the customization of performance goals. Participants requested improvements to the visual design and learnability of the Web interface, the customization of reminders, feedback about specific tilt parameters, and the bidirectionality of the interaction between the user and the clinician. They thought the current version of the intervention prototype could promote optimal use of the tilt and improve clinical postprocurement follow-up. Conclusions: On the basis of the needs identified by power wheelchair users and clinicians regarding the prototype of a power tilt-in-space wheelchair monitoring system, 3 main directions were defined for future development of the intervention. Further research with new wheelchair users, manual tilt-in-space wheelchairs, various age groups, and family caregivers is recommended to continue the formative evaluation of the prototype. ", doi="10.2196/13560", url="https://rehab.jmir.org/2019/2/e13560", url="http://www.ncbi.nlm.nih.gov/pubmed/31674918" } @Article{info:doi/10.2196/14039, author="Fyffe, C. Denise and Williams, Joyce and Tobin, Paul and Gibson-Gill, Carol", title="Spinal Cord Injury Veterans' Disability Benefits, Outcomes, and Health Care Utilization Patterns: Protocol for a Qualitative Study", journal="JMIR Res Protoc", year="2019", month="Oct", day="4", volume="8", number="10", pages="e14039", keywords="veterans", keywords="spinal cord injuries", keywords="health care", abstract="Background: An estimated 42,000 people currently living with chronic spinal cord injury (SCI) are veterans. SCI was a common combat-related injury in the World Wars and Vietnam era and now affects more than 11\% of military personnel injured in Operation Iraqi Freedom and Operation Enduring Freedom. The Veterans Benefits Administration primarily offers financial compensation for disabilities sustained or re-aggravated during military service, called service-connected disability compensation. With the overwhelming cost of living with an SCI, this monthly financial compensation can provide service-connected veterans and their families with access to additional supportive resources (eg, assistive devices and personal aide) and maintain their quality of life (QOL). Little is known about personal, health, functional, and QOL outcomes associated with service-connected and nonservice-connected status for veterans living with an SCI. Objective: The aim of this study is to compare the ways in which Veterans Affairs' (VA) service-connected and nonservice-connected status may be associated with health and functional outcomes, choice of health care provider, and overall QOL for veterans living with an SCI and their caregivers. Methods: This cross-sectional qualitative study will gather data using retrospective chart reviews, semistructured interviews, and focus groups. After obtaining institutional review board (IRB) approval, purposeful sampling techniques will be used to recruit and enroll the following key stakeholders: veterans living with an SCI, family caregivers, and SCI health care providers. Concurrent data collection will take place at 2 sites: Veterans Administration New Jersey Healthcare System and Northern New Jersey Spinal Cord Injury System. Results: This study was funded in July 2015. IRB approval was obtained by November 2016 at both sites. Enrollment and data collection for phase 1 to phase 4 are complete. A total of 69 veterans, 18 caregivers, and 19 SCI clinicians enrolled in the study. Data analyses for these phases are underway. In phase 5, the follow-up focus group activities are scheduled. The final results are expected by the end of 2019. Conclusions: The factors that contribute to veterans living with SCI seeking and not seeking VA disability compensation benefits are not well understood in rehabilitation research. Triangulation of these data sources will allow us to compare, contrast, and integrate the results, which can be used to develop clinical guidelines, caregiver training, and patient education programs. International Registered Report Identifier (IRRID): DERR1-10.2196/14039 ", doi="10.2196/14039", url="https://www.researchprotocols.org/2019/10/e14039", url="http://www.ncbi.nlm.nih.gov/pubmed/31588906" } @Article{info:doi/10.2196/13511, author="Terrill, L. Alexandra and MacKenzie, J. Justin and Reblin, Maija and Einerson, Jackie and Ferraro, Jesse and Altizer, Roger", title="A Collaboration Between Game Developers and Rehabilitation Researchers to Develop a Web-Based App for Persons With Physical Disabilities: Case Study", journal="JMIR Rehabil Assist Technol", year="2019", month="Sep", day="6", volume="6", number="2", pages="e13511", keywords="spinal cord injury", keywords="software design", keywords="interdisciplinary health team", keywords="rehabilitation", keywords="internet", abstract="Background: Individuals with a disability and their partners, who often provide care, are both at risk for depression and lower quality of life. Mobile health (mHealth) interventions are promising to address barriers to mental health care. Rehabilitation researchers and software development researchers must collaborate effectively with each other and with clinical and patient stakeholders to ensure successful mHealth development. Objective: This study aimed to aid researchers interested in mHealth software development by describing the collaborative process between a team of rehabilitation researchers, software development researchers, and stakeholders. Thus, we provide a framework (conceptual model) for other teams to replicate to build a Web-based mHealth app for individuals with physical disability. Methods: Rehabilitation researchers, software development researchers, and stakeholders (people with physical disabilities and clinicians) are involved in an iterative software development process. The overall process of developing an mHealth intervention includes initial development meetings and a co-design method called design box, in which the needs and key elements of the app are discussed. On the basis of the objectives outlined, a prototype is developed and goes through scoping iterations with feedback from stakeholders and end users. The prototype is then tested by users to identify technical errors and gather feedback on usability and accessibility. Results: Illustrating the overall development process, we present a case study based on our experience developing an app (SupportGroove) for couples coping with spinal cord injury. Examples of how we addressed specific challenges are also included. For example, feedback from stakeholders resulted in development of app features for individuals with limited functional ability. Initial designs lacked accessibility design principles made visible by end users. Solutions included large text, single click, and minimal scrolling to facilitate menu navigation for individuals using eye gaze technology. Prototype testing allowed further refinement and demonstrated high usability and engagement with activities in the app. Qualitative feedback indicated high levels of satisfaction, accessibility, and confidence in potential utility. We also present key lessons learned about working in a collaborative interdisciplinary team. Conclusions: mHealth promises to help overcome barriers to mental health intervention access. However, the development of these interventions can be challenging because of the disparate and often siloed expertise required. By describing the mHealth software development process and illustrating it with a successful case study of rehabilitation researchers, software development researchers, and stakeholders collaborating effectively, our goal is to help other teams avoid challenges we faced and benefit from our lessons learned. Ultimately, good interdisciplinary collaboration will benefit individuals with disabilities and their families. ", doi="10.2196/13511", url="http://rehab.jmir.org/2019/2/e13511/", url="http://www.ncbi.nlm.nih.gov/pubmed/31573927" } @Article{info:doi/10.2196/14305, author="Kryger, Alan Michael and Crytzer, M. Theresa and Fairman, Andrea and Quinby, J. Eleanor and Karavolis, Meredith and Pramana, Gede and Setiawan, Agus I. Made and McKernan, Pugliano Gina and Parmanto, Bambang and Dicianno, E. Brad", title="The Effect of the Interactive Mobile Health and Rehabilitation System on Health and Psychosocial Outcomes in Spinal Cord Injury: Randomized Controlled Trial", journal="J Med Internet Res", year="2019", month="Aug", day="28", volume="21", number="8", pages="e14305", keywords="cellular phone", keywords="emergency departments", keywords="hospitalization", keywords="mobile applications", keywords="pressure ulcer", keywords="rehabilitation", keywords="self-care", keywords="spinal cord injury", keywords="telemedicine", keywords="urinary tract infections", abstract="Background: Individuals with spinal cord injury (SCI) are at risk for secondary medical complications, such as urinary tract infections (UTIs) and pressure injuries, that could potentially be mitigated through improved self-management techniques. The Interactive Mobile Health and Rehabilitation (iMHere) mobile health (mHealth) system was developed to support self-management for individuals with disabilities. Objective: The main objective of this study was to determine if the use of iMHere would be associated with improved health outcomes over a 9-month period. A secondary objective was to determine if the use of iMHere would be associated with improved psychosocial outcomes. Phone usage, app usage, and training time data were also collected to analyze trends in iMHere use. Methods: Overall, 38 participants with SCI were randomized into either the intervention group who used the iMHere system and received standard care or the control group who received standard care without any technology intervention. Health outcomes were recorded for the year before entry into the study and during the 9 months of the study. Participants completed surveys at baseline and every 3 months to measure psychosocial outcomes. Results: The intervention group had a statistically significant reduction in UTIs (0.47 events per person; P=.03; number needed to treat=2.11). Although no psychosocial outcomes changed significantly, there was a nonsignificant trend toward a reduction in mood symptoms in the intervention group compared with the control group meeting the threshold for clinical significance. Approximately 34 min per participant per month were needed on average to manage the system and provide technical support through this mHealth system. Conclusions: The use of the iMHere mHealth system may be a valuable tool in the prevention of UTIs or reductions in depressive symptoms. Given these findings, iMHere has potential scalability for larger populations. Trial Registration: ClinicalTrials.gov NCT02592291; https://clinicaltrials.gov/ct2/show/NCT02592291. ", doi="10.2196/14305", url="http://www.jmir.org/2019/8/e14305/", url="http://www.ncbi.nlm.nih.gov/pubmed/31464189" } @Article{info:doi/10.2196/14788, author="Wilroy, D. Jereme and Martin Ginis, A. Kathleen and Rimmer, H. James and Wen, Huacong and Howell, Jennifer and Lai, Byron", title="An E-Learning Program for Increasing Physical Activity Associated Behaviors Among People with Spinal Cord Injury: Usability Study", journal="JMIR Form Res", year="2019", month="Aug", day="21", volume="3", number="3", pages="e14788", keywords="physical activity", keywords="mhealth", keywords="ehealth", keywords="people with disabilities", keywords="spinal cord injuries", abstract="Background: The majority of people with spinal cord injury (SCI) in the United States are not meeting the recommended guidelines for regular physical activity. Behavior change techniques (eg, goal setting and action planning) that are framed within the principles of the social cognitive theory (self-efficacy and self-regulation) have the potential to enhance physical activity behavior. Objective: The aim of the study was to develop and test the usability of an electronic learning (e-learning) program for improving social cognitive factors related to physical activity behavior among people with SCI. Methods: The program was created through an iterative process of development and refinement, using a modification of a similar methodology used to develop evidence-informed guidelines in health promotion for people with disabilities (Guidelines, Recommendations, and Adaptations Including Disability; GRAIDs framework). The study included 4 phases: (1) initial product creation, (2) national survey, (3) expert review, and (4) usability testing. Usability testing included both quantitative and qualitative data collection and analyses. Results: The review of the program by an expert panel (n=5) and the results from a national survey (n=142) led to several refinements. Usability testing demonstrated that the program could be completed in a timely manner (<30 min). Participants reported 5 themes: (1) the program improves social cognitions related to physical activity participation; (2) reflection of physical activity behavior; (3) positive perceptions of the quality of the program; (4) positive perceptions of the program operation and effectiveness; and (5) recommendations for improvement. Each item was incorporated into a revised program version 1.0. Conclusions: This study incorporated an evidence-based framework for developing a brief 30-min e-learning program for increasing the physical activity behavior among people with SCI. The Exercise Strategies Through Optimized Relevant Interactive E-learning Storytelling (e-STORIES) program could be completed in a timely manner and was reported by participants as valuable and useful for enhancing intent-to-perform physical activity in individuals with SCI. The program has the potential to be applied in a variety of settings, but feasibility testing is required before implementing in a larger trial. ", doi="10.2196/14788", url="http://formative.jmir.org/2019/3/e14788/", url="http://www.ncbi.nlm.nih.gov/pubmed/31436161" } @Article{info:doi/10.2196/12507, author="Pancer, Max and Manganaro, Melissa and Pace, Isabella and Marion, Patrick and Gagnon, H. Dany and Laram{\'e}e, Marie-Th{\'e}r{\`e}se and Messier, Fr{\'e}d{\'e}ric and Amari, Fatima and Ahmed, Sara", title="A Web-Based Physical Activity Portal for Individuals Living With a Spinal Cord Injury: Qualitative Study", journal="JMIR Form Res", year="2019", month="Jul", day="26", volume="3", number="3", pages="e12507", keywords="spinal cord injuries", keywords="self-management", keywords="internet", keywords="exercise", keywords="motivation", keywords="volition", abstract="Background: The population with a spinal cord injury (SCI) largely remains inactive following discharge from rehabilitation despite evidence on the benefits of physical activity. These individuals need to develop skills to self-manage their condition in order to prevent secondary comorbidities and rehospitalization. A Web-based physical activity portal can address this need. Few Web-based interventions incorporate theoretical frameworks, behavior change techniques, and modes of delivery into their design. Objective: This study aimed to identify the preferred features of a Web-based self-management physical activity portal through stakeholder engagement with individuals with a spinal cord injury and health care professionals (HCPs). Methods: An interpretative phenomenology methodology and participatory design, along with an integrated knowledge translation approach, were used to conduct this study. Convenience sampling was used to recruit individuals with an SCI living in the community, who were either interested or already engaging in physical activity, and HCPs working with individuals with an SCI, from three city-based rehabilitation sites. Individual 1-hour sessions involving navigation of an existing website and a semistructured interview were conducted with all participants. Individuals with an SCI completed a demographics questionnaire prior to the individual sessions, while demographic information of the HCPs was collected during their interviews. Additionally, all participants were asked a question on their intention to use or recommend a portal. An in-depth thematic analysis was used to derive themes from participants' responses. Results: Thirteen individuals with an SCI and nine HCPs participated in the study. Five core themes emerged: (1) knowledge: guidance and barrier management; (2) possibility of achievement: the risks and benefits of physical activity and modelling; (3) self-regulation strategies: action planning, goal setting, tracking, rewards, and reminders; (4) interactivity: peers and professionals; and (5) format: appearance, language, and ease of use. The mean (median) ratings of the likelihood of promoting and using a Web-based portal tailored to individuals' needs were 9.00 (8.78) and 7.75 (7.88) for HCPs and individuals with an SCI, respectively. Conclusions: This study highlights features of an online self-management platform that can provide individuals with an SCI the motivation and volition to engage in physical activity. These findings will inform the design of a Web-based self-management physical activity portal to increase physical activity adherence and behavior change. ", doi="10.2196/12507", url="http://formative.jmir.org/2019/3/e12507/", url="http://www.ncbi.nlm.nih.gov/pubmed/31350835" } @Article{info:doi/10.2196/10798, author="Best, L. Krista and Routhier, Fran{\c{c}}ois and Sweet, N. Shane and Lacroix, Emilie and Arbour-Nicitopoulos, P. Kelly and Borisoff, F. Jaimie", title="Smartphone-Delivered Peer Physical Activity Counseling Program for Individuals With Spinal Cord Injury: Protocol for Development and Pilot Evaluation", journal="JMIR Res Protoc", year="2019", month="Mar", day="22", volume="8", number="3", pages="e10798", keywords="smartphone", keywords="mobile phone", keywords="behavior change", keywords="digital peer training", keywords="leisure-time physical activity", keywords="spinal cord injury", keywords="Medical Research Council framework", abstract="Background: Leisure-time physical activity (LTPA) is a critical component of a healthy lifestyle for individuals with spinal cord injury (SCI). However, most individuals are not sufficiently active to accrue health benefits. The Active Living Lifestyles program for individuals with SCI who use manual wheelchairs (ALLWheel) targets important psychological factors that are associated with LTPA uptake and adherence while overcoming some barriers associated with participation restrictions. Objective: The goal of the paper is to describe the protocol for the development and evaluation of the ALLWheel program for individuals with SCI who use manual wheelchairs. Methods: The first three stages of the Medical Research Council framework for developing and evaluating complex interventions (ie, preclinical, modeling, exploratory) are described. The preclinical phase will consist of scoping and systematic reviews and review of theory. The intervention will be modeled by expert opinions and consensus through focus groups and Delphi surveys with individuals with SCI, clinicians, and community partners. Finally, the feasibility and potential influence of the ALLWheel program on LTPA and psychological outcomes will be evaluated. Results: This project is funded by the Craig H Neilsen Foundation, the Fonds de Recherche du Qu{\'e}bec--Sant{\'e}, and the Canadian Disability Participation Project and is currently underway. Conclusions: Using peer trainers and mobile phone technology may help to cultivate autonomy-supportive environments that also enhance self-efficacy. Following a framework for developing and evaluating a novel intervention that includes input from stakeholders at all stages will ensure the final product (ie, a replicable intervention) is desirable to knowledge users and ready for evaluation in a randomized controlled trial. If effective, the ALLWheel program has the potential to reach a large number of individuals with SCI to promote LTPA uptake and adherence. International Registered Report Identifier (IRRID): DERR1-10.2196/10798 ", doi="10.2196/10798", url="http://www.researchprotocols.org/2019/3/e10798/", url="http://www.ncbi.nlm.nih.gov/pubmed/30901001" } @Article{info:doi/10.2196/11023, author="Swank, Chad and Wang-Price, Sharon and Gao, Fan and Almutairi, Sattam", title="Walking With a Robotic Exoskeleton Does Not Mimic Natural Gait: A Within-Subjects Study", journal="JMIR Rehabil Assist Technol", year="2019", month="Jan", day="14", volume="6", number="1", pages="e11023", keywords="electromyography", keywords="gait", keywords="kinematics", keywords="lower extremity", keywords="muscle activation", keywords="range of motion", keywords="robotic exoskeleton", abstract="Background: Robotic exoskeleton devices enable individuals with lower extremity weakness to stand up and walk over ground with full weight-bearing and reciprocal gait. Limited information is available on how a robotic exoskeleton affects gait characteristics. Objective: The purpose of this study was to examine whether wearing a robotic exoskeleton affects temporospatial parameters, kinematics, and muscle activity during gait. Methods: The study was completed by 15 healthy adults (mean age 26.2 [SD 8.3] years; 6 males, 9 females). Each participant performed walking under 2 conditions: with and without wearing a robotic exoskeleton (EKSO). A 10-camera motion analysis system synchronized with 6 force plates and a surface electromyography (EMG) system captured temporospatial and kinematic gait parameters and lower extremity muscle activity. For each condition, data for 5 walking trials were collected and included for analysis. Results: Differences were observed between the 2 conditions in temporospatial gait parameters of speed, stride length, and double-limb support time. When wearing EKSO, hip and ankle range of motion (ROM) were reduced and knee ROM increased during the stance phase. However, during the swing phase, knee and ankle ROM were reduced when wearing the exoskeleton bionic suit. When wearing EKSO, EMG activity decreased bilaterally in the stance phase for all muscle groups of the lower extremities and in the swing phase for the distal muscle groups (tibialis anterior and soleus) as well as the left medial hamstrings. Conclusions: Wearing EKSO altered temporospatial gait parameters, lower extremity kinematics, and muscle activity during gait in healthy adults. EKSO appears to promote a type of gait that is disparate from normal gait in first-time users. More research is needed to determine the impact on gait training with EKSO in people with gait impairments. ", doi="10.2196/11023", url="http://rehab.jmir.org/2019/1/e11023/", url="http://www.ncbi.nlm.nih.gov/pubmed/31344681" } @Article{info:doi/10.2196/11748, author="Barbareschi, Giulia and Holloway, Catherine and Bianchi-Berthouze, Nadia and Sonenblum, Sharon and Sprigle, Stephen", title="Use of a Low-Cost, Chest-Mounted Accelerometer to Evaluate Transfer Skills of Wheelchair Users During Everyday Activities: Observational Study", journal="JMIR Rehabil Assist Technol", year="2018", month="Dec", day="20", volume="5", number="2", pages="e11748", keywords="wheelchair transfers", keywords="movement evaluation", keywords="machine learning", keywords="activity monitoring", keywords="accelerometer", abstract="Background: Transfers are an important skill for many wheelchair users (WU). However, they have also been related to the risk of falling or developing upper limb injuries. Transfer abilities are usually evaluated in clinical settings or biomechanics laboratories, and these methods of assessment are poorly suited to evaluation in real and unconstrained world settings where transfers take place. Objective: The objective of this paper is to test the feasibility of a system based on a wearable low-cost sensor to monitor transfer skills in real-world settings. Methods: We collected data from 9 WU wearing triaxial accelerometer on their chest while performing transfers to and from car seats and home furniture. We then extracted significant features from accelerometer data based on biomechanical considerations and previous relevant literature and used machine learning algorithms to evaluate the performance of wheelchair transfers and detect their occurrence from a continuous time series of data. Results: Results show a good predictive accuracy of support vector machine classifiers when determining the use of head-hip relationship (75.9\%) and smoothness of landing (79.6\%) when the starting and ending of the transfer are known. Automatic transfer detection reaches performances that are similar to state of the art in this context (multinomial logistic regression accuracy 87.8\%). However, we achieve these results using only a single sensor and collecting data in a more ecological manner. Conclusions: The use of a single chest-placed accelerometer shows good predictive accuracy for algorithms applied independently to both transfer evaluation and monitoring. This points to the opportunity for designing ubiquitous-technology based personalized skill development interventions for WU. However, monitoring transfers still require the use of external inputs or extra sensors to identify the start and end of the transfer, which is needed to perform an accurate evaluation. ", doi="10.2196/11748", url="http://rehab.jmir.org/2018/2/e11748/", url="http://www.ncbi.nlm.nih.gov/pubmed/30573447" } @Article{info:doi/10.2196/rehab.8158, author="Allin, Sonya and Shepherd, John and Tomasone, Jennifer and Munce, Sarah and Linassi, Gary and Hossain, Noreen Saima and Jaglal, Susan", title="Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study", journal="JMIR Rehabil Assist Technol", year="2018", month="Mar", day="21", volume="5", number="1", pages="e6", keywords="health education", keywords="internet", keywords="spinal cord injuries", keywords="self-management", abstract="Background: Rehospitalization rates resulting from secondary conditions in persons with spinal cord injuries (SCI) are high. Self-management programs for many chronic conditions have been associated with decreases in hospital readmissions. However, in the SCI community, evidence suggests that satisfaction with traditional self-management programs is low. Users with SCI have indicated preference for programs that are online (rather than in-person), that target SCI-specific concerns, and are led by peers with SCI. There is currently no program with all of these features, which addresses self-management of secondary conditions after SCI. Objective: The aim of this study was to provide details of a participatory design (PD) process for an internet-mediated self-management program for users with SCI (called SCI \& U) and illustrate how it has been used to define design constraints and solutions. Methods: Users were involved in development as codesigners, codevelopers, and key informants. Codesigners and codevelopers were recruited from consumer advocacy groups and worked with a core development team. Key informants were recruited from geographically distributed advocacy groups to form a product advisory council that met regularly with the core team. During meetings, codesigners and informants walked through stages of work that typify PD processes such as exploration, discovery, and prototyping. This paper details the process by analyzing 10 meetings that took place between August 2015 and May 2016. Meetings were recorded, transcribed, and subjected to an inductive thematic analysis; resulting themes were organized according to their relationship to PD stages. Results: A total of 16 individuals participated in meeting discussions, including 7 researchers and 9 persons with SCI from 4 Canadian provinces. Themes of trust, expertise, and community emerged in every group discussion. The exploration stage revealed interest in online self-management resources coupled with concerns about information credibility. In general, participants indicated that they felt more confident with information received from trusted, in-person sources (eg, peers or health care professionals) than information found online. The discovery stage saw participants propose and discuss concepts to filter credible information and highlight community expertise, namely (1) a community-curated resource database, (2) online information navigators, and (3) group chats with peers. Several tools and techniques were collectively prototyped in an effort to foster trust and community; these are illustrated in the Results section. Conclusions: A PD process engaging users as codesigners, codevelopers, and informants can be used to identify design concerns and prototype online solutions to promote self-management after SCI. Future work will assess the usability of the collectively designed tools among a broad population of Canadians with SCI and the tools' impact on self-efficacy and health. ", doi="10.2196/rehab.8158", url="http://rehab.jmir.org/2018/1/e6/", url="http://www.ncbi.nlm.nih.gov/pubmed/29563075" } @Article{info:doi/10.2196/resprot.8655, author="Hijikata, Yasuhiro and Katsuno, Masahisa and Suzuki, Keisuke and Hashizume, Atsushi and Araki, Amane and Yamada, Shinichiro and Inagaki, Tomonori and Ito, Daisuke and Hirakawa, Akihiro and Kinoshita, Fumie and Gosho, Masahiko and Sobue, Gen", title="Treatment with Creatine Monohydrate in Spinal and Bulbar Muscular Atrophy: Protocol for a Randomized, Double-Blind, Placebo-Controlled Trial", journal="JMIR Res Protoc", year="2018", month="Mar", day="05", volume="7", number="3", pages="e69", keywords="spinal and bulbar muscular atrophy", keywords="creatine", keywords="randomized controlled trials", abstract="Background: Although spinal and bulbar muscular atrophy (SBMA) has been classified as a motor neuron disease, several reports have indicated the primary involvement of skeletal muscle in the pathogenesis of this devastating disease. Recent studies reported decreased intramuscular creatine levels in skeletal muscles in both patients with SBMA and transgenic mouse models of SBMA, which appears to contribute to muscle weakness. Objective: The present study aimed to examine the efficacy and safety of oral creatine supplementation to improve motor function in patients with SBMA. Methods: A randomized, double-blind, placebo-controlled, three-armed clinical trial was conducted to assess the safety and efficacy of creatine therapy in patients with SBMA. Patients with SBMA eligible for this study were assigned randomly in a 1:1:1 ratio to each group of placebo, 10 g, or 15 g daily dose of creatine monohydrate in a double-blind fashion. Participants took creatine or placebo orally 3 times a day for 8 weeks. Outcome measurements were results of neurological assessments, examinations, and questionnaires collected at baseline and at weeks 4, 8, and 16 after a washout period. The primary endpoint was the change in handgrip strength values from baseline to week 8. The secondary endpoints included the following: results of maximum voluntary isometric contraction tests of extremities; tongue pressure; results of the 15-foot timed walk test and the rise from bed test; modified quantitative myasthenia gravis score; respiratory function test results; activities of daily living assessed with the Revised Amyotrophic Lateral Sclerosis Functional Rating Scale and the Spinal and Bulbar Muscular Atrophy Functional Rating Scale; skeletal muscle mass measured with dual-energy X-ray absorptiometry; urinary 8-hydroxydeoxyguanosine levels; and questionnaires examining the quality of life, swallowing function, and fatigue. Results: Participant enrollment in the trial started from June 2014 and follow-up was completed in July 2015. The study is currently being analyzed. Conclusions: This is the first clinical trial evaluating creatine therapy in SBMA. Given that creatine serves as an energy source in skeletal muscles, recovery of intramuscular creatine concentration is expected to improve muscle strength. Trial Registration: University Hospital Medical Information Network Clinical Trials Registry UMIN000012503; https://upload.umin.ac.jp/cgi-open-bin/ctr\_e/ctr\_view.cgi?recptno=R000014611 (Archived by WebCite at http://www.webcitation.org/6xOlbPkg3). ", doi="10.2196/resprot.8655", url="https://www.researchprotocols.org/2018/3/e69/", url="http://www.ncbi.nlm.nih.gov/pubmed/29506970" } @Article{info:doi/10.2196/resprot.8054, author="van Diemen, Tijn and Scholten, WM Eline and van Nes, JW Ilse and and Geertzen, HB Jan and Post, WM Marcel", title="Self-Management and Self-Efficacy in Patients With Acute Spinal Cord Injuries: Protocol for a Longitudinal Cohort Study", journal="JMIR Res Protoc", year="2018", month="Feb", day="26", volume="7", number="2", pages="e68", keywords="spinal cord injuries", keywords="self-care", keywords="self-efficacy", keywords="rehabilitation", keywords="complications", keywords="social participation", abstract="Background: People with recently acquired spinal cord injury (SCI) experience changes in physical, social and psychological aspects of their lives. In the last decades, attention has grown for aspects of self-management and self-efficacy in SCI research. However, we still do not know what the self-management and self-efficacy outcomes of first rehabilitation are and whether utilizing these skills may prevent secondary health conditions (SHCs) and increase participation and psychological adjustment early after SCI. Objective: To describe the course and determinants of self-management and self-efficacy during and after first SCI rehabilitation; and to determine theory-based associations between self-management and self-efficacy with SHCs, participation and psychological adjustment. Methods: Multicenter prospective longitudinal cohort study. All people with a newly acquired SCI admitted to one of the 8 specialized SCI rehabilitation centers in the Netherlands will be considered for inclusion in this study. Main assessments will take place during the first and last week of admission and 3, 6 and 12 months after discharge. The target sample is 250 participants. The primary outcomes are self-management (knowledge and execution of self-care) and self-efficacy (confidence in the ability to manage the consequences of SCI and of self-care). Secondary outcome measures are SHCs, participation and psychological adjustment to SCI. Results: The first results with the complete set of data are expected in June 2019. Conclusions: This protocol describes the SELF-SCI cohort study investigating self-management and self-efficacy of initial inpatient SCI rehabilitation. Second, associations will be investigated with SHCs, participation and psychological adjustment early after onset of SCI, until 1 year after discharge. The results will be used to test theories about motivation to perform health-promoting behaviors and adjustment to SCI. ", doi="10.2196/resprot.8054", url="http://www.researchprotocols.org/2018/2/e68/", url="http://www.ncbi.nlm.nih.gov/pubmed/29483066" } @Article{info:doi/10.2196/iproc.8707, author="Hefner, Jaye and O'Connor, Kevin and Binder, David", title="Virtual Reality in Mechanical Ventilation Weaning After Spinal Cord Injury", journal="iproc", year="2017", month="Sep", day="21", volume="3", number="1", pages="e2", keywords="anxiety", keywords="pain", keywords="usability testing", keywords="user experience evaluation", keywords="virtual reality", abstract="Background: Traumatic spinal cord injury (SCI) represents an injury with devastating sequelae and limited treatment options, affecting 12,000 new patients every year in the United States. Less than 1\% of patients have complete recovery at hospital discharge. Complete spinal cord Injury at?and below cervical level 4 have intact diaphragmatic function and while they may initially require ventilator support post-injury, they are usually able to wean from the ventilator.?The survival rate for these seriously ill ventilated patients has increased dramatically over the past several decades by utilizing?resistance and endurance training with progressive ventilator free breathing?protocols.? Ventilator free endurance training can be adversely impacted by patient anxiety, depression and pain which are some of the most problematic consequences of spinal cord injury. If unattended, they can have an omnipresent and deleterious impact upon rehabilitation and perceived quality of life.? The use of virtual reality (VR) has recently been examined in hospitalized, non-spinal cord injured patients as a complimentary tool for the management of anxiety, depression, and pain.? The use of virtual reality technology as an aid to facilitate patient engagement and satisfaction with mechanical ventilation weaning in the spinal cord injury population has not been previously studied. Objective: The objective of this study is a proof-concept to propose specific use case data and experience to determine the value of utilizing VR technology in the SCI patient population who are undergoing ventilator free endurance training while participating in a ventilator weaning protocol.? We sought to gain feedback and experience from patients participating in endurance training who trialed VR during the wean period. Methods: Patients with an SCI complete C4 level or below who were admitted to Spaulding Rehabilitation Hospital (SRH) for mechanical ventilation weaning were asked to trial public-domain VR content during their ventilator free endurance training protocol time. VR content was displayed on a Samsung Galaxy 7S using a Samsung Gear VR powered by Oculus. Patients with open cranial wounds, traumatic brain injury, seizure disorder and ocular injury or deficit were excluded. Patients were queried for any adverse effects or feelings, satisfaction, interest and engagement. Results: Ten patients voluntarily trialed public-domain VR content during their?ventilator free endurance training protocol time. No patient reported feeling claustrophobic or nauseated with the VR content. One patient reported experiencing nightmares but did not associate this with the VR experience. All patients expressed positive feelings of their immersion experience through VR.? All patients expressed a sense of well-being associated with their VR experience and asked to have VR be part of their rehabilitation experience. Conclusions: VR can be successfully incorporated into the ventilator free endurance training protocol of SCI patients in the acute rehabilitation setting.? We suggest additional research and validation of VR technology in mechanical ventilation weaning in the SCI population. ", doi="10.2196/iproc.8707", url="http://www.iproc.org/2017/1/e2/" } @Article{info:doi/10.2196/jmir.7027, author="Coffey, T. Nathan and Cassese, James and Cai, Xinsheng and Garfinkel, Steven and Patel, Drasti and Jones, Rebecca and Shaewitz, Dahlia and Weinstein, A. Ali", title="Identifying and Understanding the Health Information Experiences and Preferences of Caregivers of Individuals With Either Traumatic Brain Injury, Spinal Cord Injury, or Burn Injury: A Qualitative Investigation", journal="J Med Internet Res", year="2017", month="May", day="10", volume="19", number="5", pages="e159", keywords="traumatic brain injury", keywords="burns", keywords="spinal cord injuries", keywords="caregivers", keywords="health information, consumer", keywords="qualitative research", abstract="Background: In order to meet the challenges of caring for an injured person, caregivers need access to health information. However, caregivers often feel that they lack adequate information. Previous studies of caregivers have primarily focused on either their time and emotional burdens or their health outcomes, but the information needs of caregivers have not been thoroughly investigated. Objective: The purpose of this investigation was to identify the preferred sources of health information for caregivers supporting individuals with injuries and to explore how access to this information could be improved. Methods: A total of 32 caregivers participated in semistructured interviews, which were used in order to develop a more in-depth understanding of these caregivers' information needs. Digital audio recordings of the interviews were used for analysis purposes. These audio recordings were analyzed using a thematic analysis or qualitative content analysis. All of participant's interviews were then coded using the qualitative analysis program, Nvivo 10 for Mac (QSR International). Results: The caregivers endorsed similar behaviors and preferences when seeking and accessing health information. Medical professionals were the preferred source of information, while ease of access made the Internet the most common avenue to obtain information. The challenges faced by participants were frequently a result of limited support. In describing an ideal health system, participants expressed interest in a comprehensive care website offering support network resources, instructive services about the injury and caregiving, and injury-specific materials. Conclusions: According to the participants, an ideal health information system would include a comprehensive care website that offered supportive network resources, instructive services about the injury and caregiving, and materials specific to the type of patient injury. ", doi="10.2196/jmir.7027", url="http://www.jmir.org/2017/5/e159/", url="http://www.ncbi.nlm.nih.gov/pubmed/28490418" } @Article{info:doi/10.2196/resprot.5948, author="Luther, L. Stephen and Thomason, S. Susan and Sabharwal, Sunil and Finch, K. Dezon and McCart, James and Toyinbo, Peter and Bouayad, Lina and Matheny, E. Michael and Gobbel, T. Glenn and Powell-Cope, Gail", title="Leveraging Electronic Health Care Record Information to Measure Pressure Ulcer Risk in Veterans With Spinal Cord Injury: A Longitudinal Study Protocol", journal="JMIR Res Protoc", year="2017", month="Jan", day="19", volume="6", number="1", pages="e3", keywords="natural language processing", keywords="pressure ulcer", keywords="risk assessment", keywords="spinal cord injury", keywords="text mining", abstract="Background: Pressure ulcers (PrUs) are a frequent, serious, and costly complication for veterans with spinal cord injury (SCI). The health care team should periodically identify PrU risk, although there is no tool in the literature that has been found to be reliable, valid, and sensitive enough to assess risk in this vulnerable population. Objective: The immediate goal is to develop a risk assessment model that validly estimates the probability of developing a PrU. The long-term goal is to assist veterans with SCI and their providers in preventing PrUs through an automated system of risk assessment integrated into the veteran's electronic health record (EHR). Methods: This 5-year longitudinal, retrospective, cohort study targets 12,344 veterans with SCI who were cared for in the Veterans Health Administration (VHA) in fiscal year (FY) 2009 and had no record of a PrU in the prior 12 months. Potential risk factors identified in the literature were reviewed by an expert panel that prioritized factors and determined if these were found in structured data or unstructured form in narrative clinical notes for FY 2009-2013. These data are from the VHA enterprise Corporate Data Warehouse that is derived from the EHR structured (ie, coded in database/table) or narrative (ie, text in clinical notes) data for FY 2009-2013. Results: This study is ongoing and final results are expected in 2017. Thus far, the expert panel reviewed the initial list of risk factors extracted from the literature; the panel recommended additions and omissions and provided insights about the format in which the documentation of the risk factors might exist in the EHR. This list was then iteratively refined through review and discussed with individual experts in the field. The cohort for the study was then identified, and all structured, unstructured, and semistructured data were extracted. Annotation schemas were developed, samples of documents were extracted, and annotations are ongoing. Operational definitions of structured data elements have been created and steps to create an analytic dataset are underway. Conclusions: To our knowledge, this is the largest cohort employed to identify PrU risk factors in the United States. It also represents the first time natural language processing and statistical text mining will be used to expand the number of variables available for analysis. A major strength of this quantitative study is that all VHA SCI centers were included in the analysis, reducing potential for selection bias and providing increased power for complex statistical analyses. This longitudinal study will eventually result in a risk prediction tool to assess PrU risk that is reliable and valid, and that is sensitive to this vulnerable population. ", doi="10.2196/resprot.5948", url="http://www.researchprotocols.org/2017/1/e3/", url="http://www.ncbi.nlm.nih.gov/pubmed/28104580" } @Article{info:doi/10.2196/resprot.5887, author="Pefile, Ntsikelelo and Mothabeng, Joyce and Naidoo, Saloshni", title="A Multidisciplinary Model to Guide Employment Outcomes Among People Living With Spinal Cord Injuries in South Africa: A Mixed Methods Study Protocol", journal="JMIR Res Protoc", year="2016", month="Dec", day="06", volume="5", number="4", pages="e238", keywords="employment", keywords="spinal cord injury", keywords="vocational rehabilitation", abstract="Background: Spinal cord injury (SCI) often results in complete or partial loss of functioning of the upper and/or lower limbs, leading to the affected individual experiencing difficulties in performing activities of daily living. This results in reduced participation in social, religious, recreational, and economic activities (employment). The South Africa legal framework promotes the employment and assistance of people with disabilities. However, rehabilitation interventions focus mainly on impairments and activity limitations, with few attempts to prepare those with SCI to return to gainful employment. There is therefore a need for a well-coordinated, multidisciplinary rehabilitation initiative that will promote the employment of people living with spinal cord injuries (PLWSCI) in South Africa. Objective: This study aims to develop a multidisciplinary model to guide employment outcomes amongst PLWSCI in South Africa. Methods: This study will utilize explanatory mixed methods during 3 phases. The first phase will explore the current rehabilitation practices, and the second will establish the factors that influence employment outcomes among PLWSCI. A multidisciplinary team consisting of health care professionals, representatives from the departments of Labour, Education, Social Development, and Health, and nongovernment organizations representing PLWSCI will provide feedback for the model development of phase 3, along with results from the previous 2 phases, using a multistage Delphi technique. Results: It is estimated that the results of phases 1 and 2 will be completed 11 months after data collection commencement (November 2015). Phase 3 results will be finalized 4 months after phases 1 and 2. Conclusions: Developing a multidisciplinary model to guide the employment outcomes of PLWSCI will ensure a coordinated response to integrate them into a productive life and will assist them to achieve economic self-sufficiency, personal growth, social integration, life satisfaction, and an improved quality of life. This can be achieved by active inclusion of PLWSCI to ensure that their concerns and recommendations are addressed. ClinicalTrial: ClinicalTrials.gov NCT02582619; https://clinicaltrials.gov/ct2/show/NCT02582619 (Archived by WebCite at http://www.webcitation.org/6mBgcj6z7) ", doi="10.2196/resprot.5887", url="http://www.researchprotocols.org/2016/4/e238/", url="http://www.ncbi.nlm.nih.gov/pubmed/27923779" } @Article{info:doi/10.2196/resprot.6275, author="Kumar, Ramesh and Htwe, Ohnmar and Baharudin, Azmi and Ariffin, Hisam Mohammad and Abdul Rhani, Shaharuddin and Ibrahim, Kamalnizat and Rustam, Aishah and Gan, Robert", title="Spinal Cord Injury---Assessing Tolerability and Use of Combined Rehabilitation and NeuroAiD (SATURN Study): Protocol of An Exploratory Study In Assessing the Safety and Efficacy of NeuroAiD Amongst People Who Sustain Severe Spinal Cord Injury", journal="JMIR Res Protoc", year="2016", month="Dec", day="05", volume="5", number="4", pages="e230", keywords="spinal cord injury", keywords="NeuroAiD", keywords="MLC601", keywords="MLC901", keywords="safety", keywords="recovery", keywords="efficacy", abstract="Background: Spinal cord injury (SCI) is a devastating condition with limited therapeutic options despite decades of research. Current treatment options include use of steroids, surgery, and rehabilitation. Nevertheless, many patients with SCI remain disabled. MLC601 (NeuroAiD), a combination of natural products, has been shown to be safe and to aid neurological recovery after brain injuries and may have a potential role in improving recovery after SCI. Objective: The aim of this study is to evaluate the safety and efficacy of NeuroAiD amongst people who sustain SCI in the study setting. Methods: Spinal Cord Injury---Assessing Tolerability and Use of Combined Rehabilitation and NeuroAiD (SATURN) is a prospective cohort study of patients with moderately severe to severe SCI, defined as American Spinal Injury Association (ASIA) Impairment Scale (AIS) A and B. These patients will be treated with open-label NeuroAiD for 6 months in addition to standard care and followed for 24 months. Anonymized data will be prospectively collected at baseline and months 1, 3, 6, 12, 18, and 24 and will include information on demographics; main diagnostics; and neurological and functional state assessed by the Spinal Cord Independence Measure, ASIA---International Standard for Neurological Classification Spinal Cord Injury, and Short Form (SF-8) Health Survey. In addition, NeuroAiD treatment, compliance, concomitant therapies, and side effects, if any, will be collected. Investigators will use a secured online system for data entry. The study is approved by the ethics committee of Hospital University Kebangsaan Malaysia. Results: The coprimary endpoints are safety, AIS grade, and improvement in ASIA motor score at 6 months. Secondary endpoints are AIS grade, ASIA motor scores and sensory scores, Spinal Cord Independence Measure (SCIM), SF-8 Health Survey, and compliance at other time points. Conclusions: SATURN investigates the promising role of NeuroAiD in SCI especially given its excellent safety profile. We described here the protocol and online data collection tool we will use for this prospective cohort study. The selection of moderately severe to severe SCI provides an opportunity to investigate the role of NeuroAiD in addition to standard rehabilitation in patients with poor prognosis. The results will provide important information on the feasibility of conducting larger controlled trials to improve long-term outcome of patients with SCI. Trial Registration: Clinicaltrials.gov NCT02537899; https://clinicaltrials.gov/ct2/show/NCT02537899 (Archived by WebCite at http://www.webcitation.org/6m2pncVTG) ", doi="10.2196/resprot.6275", url="http://www.researchprotocols.org/2016/4/e230/", url="http://www.ncbi.nlm.nih.gov/pubmed/27919862" } @Article{info:doi/10.2196/rehab.5524, author="Lai, Byron and Rimmer, James and Barstow, Beth and Jovanov, Emil and Bickel, Scott C.", title="Teleexercise for Persons With Spinal Cord Injury: A Mixed-Methods Feasibility Case Series", journal="JMIR Rehabil Assist Technol", year="2016", month="Jul", day="14", volume="3", number="2", pages="e8", keywords="exercise", keywords="physical activity", keywords="telehealth", keywords="spinal cord injury", keywords="persons with disabilities", abstract="Background: Spinal cord injury (SCI) results in significant loss of function below the level of injury, often leading to restricted participation in community exercise programs. To overcome commonly experienced barriers to these programs, innovations in technology hold promise for remotely delivering safe and effective bouts of exercise in the home. Objective: To test the feasibility of a remotely delivered home exercise program for individuals with SCI as determined by (1) implementation of the intervention in the home; (2) exploration of the potential intervention effects on aerobic fitness, physical activity behavior, and subjective well-being; and (3) acceptability of the program through participant self-report. Methods: Four adults with SCI (mean age 43.5 [SD 5.3] years; 3 males, 1 female; postinjury 25.8 [SD 4.3] years) completed a mixed-methods sequential design with two phases: an 8-week intervention followed by a 3-week nonintervention period. The intervention was a remotely delivered aerobic exercise training program (30-45 minutes, 3 times per week). Instrumentation included an upper body ergometer, tablet, physiological monitor, and custom application that delivered video feed to a remote trainer and monitored and recorded exercise data in real time. Implementation outcomes included adherence, rescheduled sessions, minutes of moderate exercise, and successful recording of exercise data. Pre/post-outcomes included aerobic capacity (VO2 peak), the Physical Activity Scale for Individuals with Physical Disabilities (PASIPD), the Satisfaction with Life Scale (SWLS), and the Quality of Life Index modified for spinal cord injury (QLI-SCI). Acceptability was determined by participant perceptions of the program features and impact, assessed via qualitative interview at the end of the nonintervention phase. Results: Participants completed all 24 intervention sessions with 100\% adherence. Out of 96 scheduled training sessions for the four participants, only 8 (8\%) were makeup sessions. The teleexercise system successfully recorded 85\% of all exercise data. The exercise program was well tolerated by all participants. All participants described positive outcomes as a result of the intervention and stated that teleexercise circumvented commonly reported barriers to exercise participation. There were no reported adverse events and no dropouts. Conclusion: A teleexercise system can be a safe and feasible option to deliver home-based exercise for persons with SCI. Participants responded favorably to the intervention and valued teleexercise for its ability to overcome common barriers to exercise. Study results are promising but warrant further investigation in a larger sample. ", doi="10.2196/rehab.5524", url="http://rehab.jmir.org/2016/2/e8/", url="http://www.ncbi.nlm.nih.gov/pubmed/28582252" } @Article{info:doi/10.2196/jmir.3453, author="Eng, J. Janice and Noonan, K. Vanessa and Townson, F. Andrea and Higgins, E. Caroline and Rogers, Jess and Wolfe, L. Dalton", title="Impact of an Online Medical Internet Site on Knowledge and Practice of Health Care Providers: A Mixed Methods Study of the Spinal Cord Injury Rehabilitation Evidence Project", journal="J Med Internet Res", year="2014", month="Dec", day="23", volume="16", number="12", pages="e296", keywords="Internet", keywords="e-health", keywords="spinal cord injury", keywords="rehabilitation", keywords="evidence-based practice", abstract="Background: It is not known whether ongoing access to a broad-based Internet knowledge resource can influence the practice of health care providers. We undertook a study to evaluate the impact of a Web-based knowledge resource on increasing access to evidence and facilitating best practice of health care providers. Objective: The objective of this study was to evaluate (1) the impact of the Spinal Cord Injury Rehabilitation Evidence (SCIRE) project on access to information for health care providers and researchers and (2) how SCIRE influenced health care providers' management of clients. Methods: A 4-part mixed methods evaluation was undertaken: (1) monitoring website traffic and utilization using Google Analytics, (2) online survey of users who accessed the SCIRE website, (3) online survey of targeted end-users, that is, rehabilitation health care providers known to work with spinal cord injury (SCI) clients, as well as researchers, and (4) focus groups with health care providers who had previously accessed SCIRE. Results: The online format allowed the content for a relatively specialized field to have far reach (eg, 26 countries and over 6500 users per month). The website survey and targeted end-user survey confirmed that health care providers, as well as researchers perceived that the website increased their access to SCI evidence. Access to SCIRE not only improved knowledge of SCI evidence but helped inform changes to the health providers' clinical practice and improved their confidence in treating SCI clients. The SCIRE information directly influenced the health providers' clinical decision making, in terms of choice of intervention, equipment needs, or assessment tool. Conclusions: A Web-based knowledge resource may be a relatively inexpensive method to increase access to evidence-based information, increase knowledge of the evidence, inform changes to the health providers' practice, and influence their clinical decision making. ", doi="10.2196/jmir.3453", url="http://www.jmir.org/2014/12/e296/", url="http://www.ncbi.nlm.nih.gov/pubmed/25537167" }