TY - JOUR AU - Enciso, James AU - Variya, Dhruval AU - Sunthonlap, James AU - Sarmiento, Terrence AU - Lee, Mun Ka AU - Velasco, James AU - Pebdani, N. Roxanna AU - de Leon, D. Ray AU - Dy, Christine AU - Keslacy, Stefan AU - Won, Soonmee Deborah PY - 2021/1/19 TI - Electromyography-Driven Exergaming in Wheelchairs on a Mobile Platform: Bench and Pilot Testing of the WOW-Mobile Fitness System JO - JMIR Rehabil Assist Technol SP - e16054 VL - 8 IS - 1 KW - exergaming KW - gamercising KW - mobile health KW - wheelchair exercises KW - wireless electromyography KW - mobile phone N2 - 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. UR - http://rehab.jmir.org/2021/1/e16054/ UR - http://dx.doi.org/10.2196/16054 UR - http://www.ncbi.nlm.nih.gov/pubmed/33464221 ID - info:doi/10.2196/16054 ER - TY - JOUR AU - Amann, Julia AU - Fiordelli, Maddalena AU - Scheel-Sailer, Anke AU - Brach, Mirjam AU - Rubinelli, Sara PY - 2020/12/9 TI - Opportunities and Challenges of a Self-Management App to Support People With Spinal Cord Injury in the Prevention of Pressure Injuries: Qualitative Study JO - JMIR Mhealth Uhealth SP - e22452 VL - 8 IS - 12 KW - mHealth KW - eHealth KW - self-management KW - spinal cord injury KW - pressure injury KW - prevention KW - technology acceptance N2 - 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. UR - http://mhealth.jmir.org/2020/12/e22452/ UR - http://dx.doi.org/10.2196/22452 UR - http://www.ncbi.nlm.nih.gov/pubmed/33295876 ID - info:doi/10.2196/22452 ER - TY - JOUR AU - Jia, Mengmeng AU - Tang, Jie AU - Xie, Sumei AU - He, Xiaokuo AU - Wang, Yingmin AU - Liu, Ting AU - Yan, Tiebin AU - Li, Kun PY - 2020/11/11 TI - Using a Mobile App-Based International Classification of Functioning, Disability, and Health Set to Assess the Functioning of Spinal Cord Injury Patients: Rasch Analysis JO - JMIR Mhealth Uhealth SP - e20723 VL - 8 IS - 11 KW - International Classification of Functioning, Disability and Health KW - spinal cord injuries KW - mobile health app KW - Rasch analysis N2 - 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. UR - https://mhealth.jmir.org/2020/11/e20723 UR - http://dx.doi.org/10.2196/20723 UR - http://www.ncbi.nlm.nih.gov/pubmed/33174860 ID - info:doi/10.2196/20723 ER - TY - JOUR AU - Hesam-Shariati, Negin AU - Newton-John, Toby AU - Singh, K. Avinash AU - Tirado Cortes, A. Carlos AU - Do, Nguyen Tien-Thong AU - Craig, Ashley AU - Middleton, W. James AU - Jensen, P. Mark AU - Trost, Zina AU - Lin, Chin-Teng AU - Gustin, M. Sylvia PY - 2020/9/29 TI - 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 JO - JMIR Res Protoc SP - e20979 VL - 9 IS - 9 KW - EEG neurofeedback KW - neuropathic pain KW - spinal cord injury KW - thalamus KW - serious games KW - brain-machine interface KW - brain-computer interface KW - single-case experimental design N2 - 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 ?-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 UR - http://www.researchprotocols.org/2020/9/e20979/ UR - http://dx.doi.org/10.2196/20979 UR - http://www.ncbi.nlm.nih.gov/pubmed/32990249 ID - info:doi/10.2196/20979 ER - TY - JOUR AU - Bass, Alec AU - Aubertin-Leheudre, Mylène AU - Vincent, Claude AU - Karelis, D. Antony AU - Morin, N. Suzanne AU - McKerral, Michelle AU - Duclos, Cyril AU - Gagnon, H. Dany PY - 2020/9/24 TI - 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 JO - JMIR Res Protoc SP - e19251 VL - 9 IS - 9 KW - assistive technology KW - locomotion KW - spinal cord injury KW - rehabilitation KW - robotics KW - osteoporosis N2 - 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 Montréal, Québec, 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 UR - http://www.researchprotocols.org/2020/9/e19251/ UR - http://dx.doi.org/10.2196/19251 UR - http://www.ncbi.nlm.nih.gov/pubmed/32663160 ID - info:doi/10.2196/19251 ER - TY - JOUR AU - Allin, Sonya AU - Shepherd, John AU - Thorson, Teri AU - Tomasone, Jennifer AU - Munce, Sarah AU - Linassi, Gary AU - McBride, B. Christopher AU - Jiancaro, Tizneem AU - Jaglal, Susan PY - 2020/7/31 TI - Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation JO - JMIR Rehabil Assist Technol SP - e16351 VL - 7 IS - 2 KW - community-based participatory research KW - spinal cord injury KW - self-management KW - motivational interviewing KW - internet-based intervention N2 - 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. UR - http://rehab.jmir.org/2020/2/e16351/ UR - http://dx.doi.org/10.2196/16351 UR - http://www.ncbi.nlm.nih.gov/pubmed/32589148 ID - info:doi/10.2196/16351 ER - TY - JOUR AU - Amann, Julia AU - Fiordelli, Maddalena AU - Brach, Mirjam AU - Bertschy, Sue AU - Scheel-Sailer, Anke AU - Rubinelli, Sara PY - 2020/7/9 TI - Co-designing a Self-Management App Prototype to Support People With Spinal Cord Injury in the Prevention of Pressure Injuries: Mixed Methods Study JO - JMIR Mhealth Uhealth SP - e18018 VL - 8 IS - 7 KW - co-design KW - mHealth KW - eHealth KW - self-management KW - spinal cord injury KW - pressure injury N2 - 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. UR - https://mhealth.jmir.org/2020/7/e18018 UR - http://dx.doi.org/10.2196/18018 UR - http://www.ncbi.nlm.nih.gov/pubmed/32673241 ID - info:doi/10.2196/18018 ER - TY - JOUR AU - Fiordelli, Maddalena AU - Zanini, Claudia AU - Amann, Julia AU - Scheel-Sailer, Anke AU - Brach, Mirjam AU - Stucki, Gerold AU - Rubinelli, Sara PY - 2020/5/20 TI - Selecting Evidence-Based Content for Inclusion in Self-Management Apps for Pressure Injuries in Individuals With Spinal Cord Injury: Participatory Design Study JO - JMIR Mhealth Uhealth SP - e15818 VL - 8 IS - 5 KW - mHealth KW - paraplegia KW - tetraplegia KW - pressure ulcers KW - consensus meeting KW - community engagement KW - recommendations N2 - 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. UR - http://mhealth.jmir.org/2020/5/e15818/ UR - http://dx.doi.org/10.2196/15818 UR - http://www.ncbi.nlm.nih.gov/pubmed/32432559 ID - info:doi/10.2196/15818 ER - TY - JOUR AU - Gibson-Gill, McMara Carol AU - Williams, Joyce AU - Fyffe, Denise PY - 2020/5/12 TI - Triangle of Healthy Caregiving for Veterans With Spinal Cord Injury: Proposal for a Mixed Methods Study JO - JMIR Res Protoc SP - e14051 VL - 9 IS - 5 KW - veterans health KW - spinal cord injury KW - telemedicine KW - telehealth KW - delivery of health care KW - virtual health KW - health services accessibility KW - quality of life KW - patient care team KW - caregivers N2 - 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 UR - https://www.researchprotocols.org/2020/5/e14051 UR - http://dx.doi.org/10.2196/14051 UR - http://www.ncbi.nlm.nih.gov/pubmed/32396130 ID - info:doi/10.2196/14051 ER - TY - JOUR AU - Zhou, Leming AU - Saptono, Andi AU - Setiawan, Agus I. Made AU - Parmanto, Bambang PY - 2020/1/3 TI - Making Self-Management Mobile Health Apps Accessible to People With Disabilities: Qualitative Single-Subject Study JO - JMIR Mhealth Uhealth SP - e15060 VL - 8 IS - 1 KW - mobile app KW - self-management KW - accessibility KW - personalization N2 - 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. UR - https://mhealth.jmir.org/2020/1/e15060 UR - http://dx.doi.org/10.2196/15060 UR - http://www.ncbi.nlm.nih.gov/pubmed/31899453 ID - info:doi/10.2196/15060 ER - TY - JOUR AU - Cole, Maria AU - Froehlich-Grobe, Katherine AU - Driver, Simon AU - Shegog, Ross AU - McLaughlin, Jeffery PY - 2019/12/17 TI - Website Redesign of a 16-Week Exercise Intervention for People With Spinal Cord Injury by Using Participatory Action Research JO - JMIR Rehabil Assist Technol SP - e13441 VL - 6 IS - 2 KW - internet KW - exercise KW - intervention KW - spinal cord injury KW - community-based research N2 - 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. UR - http://rehab.jmir.org/2019/2/e13441/ UR - http://dx.doi.org/10.2196/13441 UR - http://www.ncbi.nlm.nih.gov/pubmed/31845902 ID - info:doi/10.2196/13441 ER - TY - JOUR AU - Campeau-Vallerand, Charles AU - Michaud, François AU - Routhier, François AU - Archambault, S. Philippe AU - Létourneau, Dominic AU - Gélinas-Bronsard, Dominique AU - Auger, Claudine PY - 2019/10/26 TI - Development of a Web-Based Monitoring System for Power Tilt-in-Space Wheelchairs: Formative Evaluation JO - JMIR Rehabil Assist Technol SP - e13560 VL - 6 IS - 2 KW - wheelchairs KW - eHealth KW - health behavior KW - pressure ulcers KW - self-help devices KW - remote sensing technology KW - technology assessment N2 - 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. UR - https://rehab.jmir.org/2019/2/e13560 UR - http://dx.doi.org/10.2196/13560 UR - http://www.ncbi.nlm.nih.gov/pubmed/31674918 ID - info:doi/10.2196/13560 ER - TY - JOUR AU - Fyffe, C. Denise AU - Williams, Joyce AU - Tobin, Paul AU - Gibson-Gill, Carol PY - 2019/10/4 TI - Spinal Cord Injury Veterans? Disability Benefits, Outcomes, and Health Care Utilization Patterns: Protocol for a Qualitative Study JO - JMIR Res Protoc SP - e14039 VL - 8 IS - 10 KW - veterans KW - spinal cord injuries KW - health care N2 - 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 UR - https://www.researchprotocols.org/2019/10/e14039 UR - http://dx.doi.org/10.2196/14039 UR - http://www.ncbi.nlm.nih.gov/pubmed/31588906 ID - info:doi/10.2196/14039 ER - TY - JOUR AU - Terrill, L. Alexandra AU - MacKenzie, J. Justin AU - Reblin, Maija AU - Einerson, Jackie AU - Ferraro, Jesse AU - Altizer, Roger PY - 2019/9/6 TI - A Collaboration Between Game Developers and Rehabilitation Researchers to Develop a Web-Based App for Persons With Physical Disabilities: Case Study JO - JMIR Rehabil Assist Technol SP - e13511 VL - 6 IS - 2 KW - spinal cord injury KW - software design KW - interdisciplinary health team KW - rehabilitation KW - internet N2 - 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. UR - http://rehab.jmir.org/2019/2/e13511/ UR - http://dx.doi.org/10.2196/13511 UR - http://www.ncbi.nlm.nih.gov/pubmed/31573927 ID - info:doi/10.2196/13511 ER - TY - JOUR AU - Kryger, Alan Michael AU - Crytzer, M. Theresa AU - Fairman, Andrea AU - Quinby, J. Eleanor AU - Karavolis, Meredith AU - Pramana, Gede AU - Setiawan, Agus I. Made AU - McKernan, Pugliano Gina AU - Parmanto, Bambang AU - Dicianno, E. Brad PY - 2019/08/28 TI - The Effect of the Interactive Mobile Health and Rehabilitation System on Health and Psychosocial Outcomes in Spinal Cord Injury: Randomized Controlled Trial JO - J Med Internet Res SP - e14305 VL - 21 IS - 8 KW - cellular phone KW - emergency departments KW - hospitalization KW - mobile applications KW - pressure ulcer KW - rehabilitation KW - self-care KW - spinal cord injury KW - telemedicine KW - urinary tract infections N2 - 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. UR - http://www.jmir.org/2019/8/e14305/ UR - http://dx.doi.org/10.2196/14305 UR - http://www.ncbi.nlm.nih.gov/pubmed/31464189 ID - info:doi/10.2196/14305 ER - TY - JOUR AU - Wilroy, D. Jereme AU - Martin Ginis, A. Kathleen AU - Rimmer, H. James AU - Wen, Huacong AU - Howell, Jennifer AU - Lai, Byron PY - 2019/08/21 TI - An E-Learning Program for Increasing Physical Activity Associated Behaviors Among People with Spinal Cord Injury: Usability Study JO - JMIR Form Res SP - e14788 VL - 3 IS - 3 KW - physical activity KW - mhealth KW - ehealth KW - people with disabilities KW - spinal cord injuries N2 - 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. UR - http://formative.jmir.org/2019/3/e14788/ UR - http://dx.doi.org/10.2196/14788 UR - http://www.ncbi.nlm.nih.gov/pubmed/31436161 ID - info:doi/10.2196/14788 ER - TY - JOUR AU - Pancer, Max AU - Manganaro, Melissa AU - Pace, Isabella AU - Marion, Patrick AU - Gagnon, H. Dany AU - Laramée, Marie-Thérèse AU - Messier, Frédéric AU - Amari, Fatima AU - Ahmed, Sara PY - 2019/07/26 TI - A Web-Based Physical Activity Portal for Individuals Living With a Spinal Cord Injury: Qualitative Study JO - JMIR Form Res SP - e12507 VL - 3 IS - 3 KW - spinal cord injuries KW - self-management KW - internet KW - exercise KW - motivation KW - volition N2 - 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. UR - http://formative.jmir.org/2019/3/e12507/ UR - http://dx.doi.org/10.2196/12507 UR - http://www.ncbi.nlm.nih.gov/pubmed/31350835 ID - info:doi/10.2196/12507 ER - TY - JOUR AU - Best, L. Krista AU - Routhier, François AU - Sweet, N. Shane AU - Lacroix, Emilie AU - Arbour-Nicitopoulos, P. Kelly AU - Borisoff, F. Jaimie PY - 2019/03/22 TI - Smartphone-Delivered Peer Physical Activity Counseling Program for Individuals With Spinal Cord Injury: Protocol for Development and Pilot Evaluation JO - JMIR Res Protoc SP - e10798 VL - 8 IS - 3 KW - smartphone KW - mobile phone KW - behavior change KW - digital peer training KW - leisure-time physical activity KW - spinal cord injury KW - Medical Research Council framework N2 - 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 Québec?Santé, 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 UR - http://www.researchprotocols.org/2019/3/e10798/ UR - http://dx.doi.org/10.2196/10798 UR - http://www.ncbi.nlm.nih.gov/pubmed/30901001 ID - info:doi/10.2196/10798 ER - TY - JOUR AU - Swank, Chad AU - Wang-Price, Sharon AU - Gao, Fan AU - Almutairi, Sattam PY - 2019/01/14 TI - Walking With a Robotic Exoskeleton Does Not Mimic Natural Gait: A Within-Subjects Study JO - JMIR Rehabil Assist Technol SP - e11023 VL - 6 IS - 1 KW - electromyography KW - gait KW - kinematics KW - lower extremity KW - muscle activation KW - range of motion KW - robotic exoskeleton N2 - 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. UR - http://rehab.jmir.org/2019/1/e11023/ UR - http://dx.doi.org/10.2196/11023 UR - http://www.ncbi.nlm.nih.gov/pubmed/31344681 ID - info:doi/10.2196/11023 ER - TY - JOUR AU - Barbareschi, Giulia AU - Holloway, Catherine AU - Bianchi-Berthouze, Nadia AU - Sonenblum, Sharon AU - Sprigle, Stephen PY - 2018/12/20 TI - Use of a Low-Cost, Chest-Mounted Accelerometer to Evaluate Transfer Skills of Wheelchair Users During Everyday Activities: Observational Study JO - JMIR Rehabil Assist Technol SP - e11748 VL - 5 IS - 2 KW - wheelchair transfers KW - movement evaluation KW - machine learning KW - activity monitoring KW - accelerometer N2 - 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. UR - http://rehab.jmir.org/2018/2/e11748/ UR - http://dx.doi.org/10.2196/11748 UR - http://www.ncbi.nlm.nih.gov/pubmed/30573447 ID - info:doi/10.2196/11748 ER - TY - JOUR AU - Allin, Sonya AU - Shepherd, John AU - Tomasone, Jennifer AU - Munce, Sarah AU - Linassi, Gary AU - Hossain, Noreen Saima AU - Jaglal, Susan PY - 2018/03/21 TI - Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study JO - JMIR Rehabil Assist Technol SP - e6 VL - 5 IS - 1 KW - health education KW - internet KW - spinal cord injuries KW - self-management N2 - 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. UR - http://rehab.jmir.org/2018/1/e6/ UR - http://dx.doi.org/10.2196/rehab.8158 UR - http://www.ncbi.nlm.nih.gov/pubmed/29563075 ID - info:doi/10.2196/rehab.8158 ER - TY - JOUR AU - Hijikata, Yasuhiro AU - Katsuno, Masahisa AU - Suzuki, Keisuke AU - Hashizume, Atsushi AU - Araki, Amane AU - Yamada, Shinichiro AU - Inagaki, Tomonori AU - Ito, Daisuke AU - Hirakawa, Akihiro AU - Kinoshita, Fumie AU - Gosho, Masahiko AU - Sobue, Gen PY - 2018/03/05 TI - Treatment with Creatine Monohydrate in Spinal and Bulbar Muscular Atrophy: Protocol for a Randomized, Double-Blind, Placebo-Controlled Trial JO - JMIR Res Protoc SP - e69 VL - 7 IS - 3 KW - spinal and bulbar muscular atrophy KW - creatine KW - randomized controlled trials N2 - 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). UR - https://www.researchprotocols.org/2018/3/e69/ UR - http://dx.doi.org/10.2196/resprot.8655 UR - http://www.ncbi.nlm.nih.gov/pubmed/29506970 ID - info:doi/10.2196/resprot.8655 ER - TY - JOUR AU - van Diemen, Tijn AU - Scholten, WM Eline AU - van Nes, JW Ilse AU - AU - Geertzen, HB Jan AU - Post, WM Marcel PY - 2018/02/26 TI - Self-Management and Self-Efficacy in Patients With Acute Spinal Cord Injuries: Protocol for a Longitudinal Cohort Study JO - JMIR Res Protoc SP - e68 VL - 7 IS - 2 KW - spinal cord injuries KW - self-care KW - self-efficacy KW - rehabilitation KW - complications KW - social participation N2 - 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. UR - http://www.researchprotocols.org/2018/2/e68/ UR - http://dx.doi.org/10.2196/resprot.8054 UR - http://www.ncbi.nlm.nih.gov/pubmed/29483066 ID - info:doi/10.2196/resprot.8054 ER - TY - JOUR AU - Hefner, Jaye AU - O'Connor, Kevin AU - Binder, David PY - 2017/09/21 TI - Virtual Reality in Mechanical Ventilation Weaning After Spinal Cord Injury JO - iproc SP - e2 VL - 3 IS - 1 KW - anxiety KW - pain KW - usability testing KW - user experience evaluation KW - virtual reality N2 - 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. UR - http://www.iproc.org/2017/1/e2/ UR - http://dx.doi.org/10.2196/iproc.8707 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/iproc.8707 ER - TY - JOUR AU - Coffey, T. Nathan AU - Cassese, James AU - Cai, Xinsheng AU - Garfinkel, Steven AU - Patel, Drasti AU - Jones, Rebecca AU - Shaewitz, Dahlia AU - Weinstein, A. Ali PY - 2017/05/10 TI - 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 JO - J Med Internet Res SP - e159 VL - 19 IS - 5 KW - traumatic brain injury KW - burns KW - spinal cord injuries KW - caregivers KW - health information, consumer KW - qualitative research N2 - 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. UR - http://www.jmir.org/2017/5/e159/ UR - http://dx.doi.org/10.2196/jmir.7027 UR - http://www.ncbi.nlm.nih.gov/pubmed/28490418 ID - info:doi/10.2196/jmir.7027 ER - TY - JOUR AU - Luther, L. Stephen AU - Thomason, S. Susan AU - Sabharwal, Sunil AU - Finch, K. Dezon AU - McCart, James AU - Toyinbo, Peter AU - Bouayad, Lina AU - Matheny, E. Michael AU - Gobbel, T. Glenn AU - Powell-Cope, Gail PY - 2017/01/19 TI - Leveraging Electronic Health Care Record Information to Measure Pressure Ulcer Risk in Veterans With Spinal Cord Injury: A Longitudinal Study Protocol JO - JMIR Res Protoc SP - e3 VL - 6 IS - 1 KW - natural language processing KW - pressure ulcer KW - risk assessment KW - spinal cord injury KW - text mining N2 - 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. UR - http://www.researchprotocols.org/2017/1/e3/ UR - http://dx.doi.org/10.2196/resprot.5948 UR - http://www.ncbi.nlm.nih.gov/pubmed/28104580 ID - info:doi/10.2196/resprot.5948 ER - TY - JOUR AU - Pefile, Ntsikelelo AU - Mothabeng, Joyce AU - Naidoo, Saloshni PY - 2016/12/06 TI - A Multidisciplinary Model to Guide Employment Outcomes Among People Living With Spinal Cord Injuries in South Africa: A Mixed Methods Study Protocol JO - JMIR Res Protoc SP - e238 VL - 5 IS - 4 KW - employment KW - spinal cord injury KW - vocational rehabilitation N2 - 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) UR - http://www.researchprotocols.org/2016/4/e238/ UR - http://dx.doi.org/10.2196/resprot.5887 UR - http://www.ncbi.nlm.nih.gov/pubmed/27923779 ID - info:doi/10.2196/resprot.5887 ER - TY - JOUR AU - Kumar, Ramesh AU - Htwe, Ohnmar AU - Baharudin, Azmi AU - Ariffin, Hisam Mohammad AU - Abdul Rhani, Shaharuddin AU - Ibrahim, Kamalnizat AU - Rustam, Aishah AU - Gan, Robert PY - 2016/12/05 TI - 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 JO - JMIR Res Protoc SP - e230 VL - 5 IS - 4 KW - spinal cord injury KW - NeuroAiD KW - MLC601 KW - MLC901 KW - safety KW - recovery KW - efficacy N2 - 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) UR - http://www.researchprotocols.org/2016/4/e230/ UR - http://dx.doi.org/10.2196/resprot.6275 UR - http://www.ncbi.nlm.nih.gov/pubmed/27919862 ID - info:doi/10.2196/resprot.6275 ER - TY - JOUR AU - Lai, Byron AU - Rimmer, James AU - Barstow, Beth AU - Jovanov, Emil AU - Bickel, Scott C. PY - 2016/07/14 TI - Teleexercise for Persons With Spinal Cord Injury: A Mixed-Methods Feasibility Case Series JO - JMIR Rehabil Assist Technol SP - e8 VL - 3 IS - 2 KW - exercise KW - physical activity KW - telehealth KW - spinal cord injury KW - persons with disabilities N2 - 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. UR - http://rehab.jmir.org/2016/2/e8/ UR - http://dx.doi.org/10.2196/rehab.5524 UR - http://www.ncbi.nlm.nih.gov/pubmed/28582252 ID - info:doi/10.2196/rehab.5524 ER - TY - JOUR AU - Eng, J. Janice AU - Noonan, K. Vanessa AU - Townson, F. Andrea AU - Higgins, E. Caroline AU - Rogers, Jess AU - Wolfe, L. Dalton PY - 2014/12/23 TI - 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 JO - J Med Internet Res SP - e296 VL - 16 IS - 12 KW - Internet KW - e-health KW - spinal cord injury KW - rehabilitation KW - evidence-based practice N2 - 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. UR - http://www.jmir.org/2014/12/e296/ UR - http://dx.doi.org/10.2196/jmir.3453 UR - http://www.ncbi.nlm.nih.gov/pubmed/25537167 ID - info:doi/10.2196/jmir.3453 ER -