Spinal Cord Injury Ontario

Background: Personal, social, and environmental factors may influence self-efficacy and social reintegration among people living with spinal cord injury or disease (SCI/D) in urban and rural areas. Novel data collection methods have the potential to characterize community participation (CP) in diverse settings. Objectives: The objectives were (1) to describe and compare self-reported community participation (Reintegration to Normal Living Index (RNLI) and Moorong Self-Efficacy Scale (MSES)) levels of individuals with SCI/D living in urban or rural Ontario, Canada; and (2) to determine the accuracy of an artificial intelligence (AI) optical mark recognition tool for extracting data from CP surveys conducted among participants after transitioning from inpatient rehabilitation to home and residing in the community. Methods: We partnered with SCI Ontario staff to collect MSES and RNLI survey data from adults with motor complete (e.g., AIS A–B) and incomplete (AIS C–D) SCI/D living in urban or rural Ontario, Canada, between January and October 2022. The Rurality Index of Ontario (RIO) from the postal code determined urban or rural residency. Optical mark recognition (OMR) software was used for survey data extraction. A Research Associate validated the extracted survey responses. Descriptive statistics, correlation analysis, and non-parametric statistics were used to describe the participants, their impairments, and their reported CP levels across urban and rural settings. Results: Eighty-five individuals with SCI/D (mean age 53.7 years, 36.5% female) completed the survey. Most of the participants resided in major urban areas (69.4%) and had traumatic injuries (64.7%). The mean total MSES score for Ontarians with SCI/D was 87.96 (95% confidence interval [CI]: 84.45, 91.47), while the mean total RNLI score for the same individuals was 75.61 (95% CI: 71.85, 79.37). Among the MSES domains, the lowest score was observed in response to sexual satisfaction (mean: 4.012, 95% CI: 3.527, 4.497), while the lowest RNLI domain item score was associated with the ability to travel out of town (mean: 5.965, 95% CI: 5.252, 6.678). Individuals with incomplete injuries in rural areas reported lower MSES and RNLI scores than those with complete motor injuries, whereas no significant differences were found in MSES and RNLI scores among urban residents based on impairment. These findings suggest that, depending on the environmental context (e.g., rural vs. urban areas), AIS categories may influence the perception of CP among people living with SCI/D. The OMR tool had 97.4% accuracy in extracting data from the surveys. Conclusions: The CP (MSES and RNLI) scores reported by individuals with SCI/D differ based on their living setting. In rural Ontario, individuals with greater functional ability reported lower CP than their counterparts living in urban settings. Although CP remains a challenge, the needs of individuals with motor incomplete SCI/D and heterogeneous levels of mobility residing in rural areas require exploration and targeted interventions. The OMR tool facilitates accurate data extraction from surveys across settings.

Activity-based therapy (ABT) has emerged as a therapeutic approach that may promote neurorecovery and reduce secondary complications in people living with spinal cord injury or disease (SCI/D). In spite of the numerous health benefits, adoption of ABT into practice has been limited across the Canadian care continuum. This study aimed to understand the challenges of implementing ABT in Canada for people living with SCI/D through the perspectives of key interest groups. Researchers, hospital therapists, community trainers, administrators, persons living with SCI/D, and advocates, funders, and policy experts who had knowledge of and/or experience with ABT participated in focus group interviews to share their perspectives on the barriers to ABT practice. Interviews were analyzed using conventional content analysis followed by a comparative analysis across groups. The 48 participants identified six key challenges: (1) challenge of gaps in knowledge/training, (2) challenge of standardizing ABT, (3) challenge of determining the optimal timing of ABT, (4) challenge of defining, characterizing, and achieving high dosage and intensity, (5) challenge of funding ABT, and (6) challenge of measuring participation and performance in ABT. A comparative analysis found some challenges were emphasized by certain groups, such as the cost of ABT for persons with SCI/D, lack of education and training in ABT for therapists and trainers, minimal evidence to develop guidelines for researchers and advocates, and funding ABT programs for administrators. Participants highlighted several challenges that limit ABT practice. Strategies to address these challenges will support successful implementation of ABT in Canada.

Purpose The development of a tool to track participation in activity-based therapy (ABT) for people with spinal cord injury or disease (SCI/D) was identified as a priority of the Canadian ABT Community of Practice. The objective of this study was to understand multi-stakeholder perspectives on tracking ABT participation across the continuum of care. Materials and methods Forty-eight individuals from six stakeholder groups (persons living with SCI/D; hospital therapists; community trainers; administrators; researchers; and funders, advocates and policy experts) were recruited to participate in focus group interviews. Participants were asked open-ended questions concerning the importance of and parameters around tracking ABT. Transcripts were analyzed using conventional content analysis. Results Themes reflected the Who, What, Where, When, Why and How of tracking ABT. Participants described the importance of involving hospital therapists, community trainers and individuals with SCI/D in tracking ABT to capture both subjective and objective parameters across the continuum of care and injury trajectory. Digital tracking tools were favoured, although paper-based versions were regarded as a necessity in some circumstances. Conclusions Findings highlighted the importance of tracking ABT participation for individuals with SCI/D. The information may guide the development of ABT practice guidelines and support the implementation of ABT in Canada.

BackgroundThe RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework is a useful tool for evaluating the impact of programs in community settings. RE-AIM has been applied to evaluate individual programs but seldom used to evaluate the collective impact of community-based, public health programming developed and delivered by multiple autonomous organizations. The purposes of this paper were to (a) demonstrate how RE-AIM can be operationalized and applied to evaluate the collective impact of similar autonomous programs that promote health and well-being and (b) provide preliminary data on the collective impact of Canadian spinal cord injury (SCI) peer mentorship programs on the delivery of peer mentorship services.MethodsCriteria from all five RE-AIM dimensions were operationalized to evaluate multiple similar community-based programs. For this study, nine provincial organizations that serve people with SCI were recruited from across Canada. Organizations completed a structured self-report questionnaire and participated in a qualitative telephone interview to examine different elements of their peer mentorship program. Data were analyzed using summary statistics.ResultsHaving multiple indicators to assess RE-AIM dimensions provided a broad evaluation of the impact of Canadian SCI peer mentorship programs. Peer mentorship programs reached 1.63% of the estimated Canadian SCI population. The majority (67%) of organizations tracked the effectiveness of peer mentorship through testimonials and reports. Setting-level adoption rates were high with 100% of organizations offering peer mentorship in community and hospital settings. On average, organizations allocated 10.4% of their operating budget and 9.8% of their staff to implement peer mentorship and 89% had maintained their programming for over 10 years. Full interpretation of the collective impact of peer mentorship programs was limited as complete data were only collected for 52% of survey questions.ConclusionsThe lack of available organizational data highlights a significant challenge when using RE-AIM to evaluate the collective impact of multiple programs that promote health and well-being. Although researchers are encouraged to use RE-AIM to evaluate the collective impact of programs delivered by different organizations, documenting limitations and providing recommendations should be done to further the understanding of how best to operationalize RE-AIM in these contexts.

Context: Persons with spinal cord injury (SCI) experience significant challenges when they access primary care and community services.Design: A provincial summit was held to direct research, education, and innovation for primary and community care for SCI.Setting: Toronto, Ontario, Canada.Participants: Key stakeholders (N = 95) including persons with SCI and caregivers, clinicians from primary care, rehabilitation, and specialized care, researchers, advocacy groups, and policy makers.Methods: A one-day facilitated meeting that included guest speakers, panel discussions and small group discussions was held to generate potential solutions to current issues related to SCI care and to foster collaborative relationships to advance care for SCI. Perspectives on SCI management were shared by primary care, neurosurgery, rehabilitation, and members of the SCI communityOutcome Measures: Discussions were focused on five domains: knowledge translation and dissemination, application of best practices, communication, research, and patient service accessibility.Results: Summit participants identified issues and prioritized solutions to improve primary and community care including the creation of a network of key stakeholders to enable knowledge creation and dissemination; an online repository of SCI resources, integrated health records, and a clinical network for SCI care; development and implementation of strategies to improve care transitions across sectors; implementation of effective care models and improved access to services; and utilization of empowerment frameworks to support self-management.Conclusions: This summit identified priorities for further collaborative efforts to advance SCI primary and community care and will inform the development of a provincial SCI strategy aimed at improving the system of care for SCI.

Clinical practice guidelines. To develop the first Canadian clinical practice guidelines for treatment of neuropathic pain in people with spinal cord injury (SCI). The guidelines are relevant for inpatient and outpatient SCI rehabilitation settings in Canada. The CanPainSCI Working Group reviewed the evidence for different treatment options and achieved consensus. The Working Group then developed clinical considerations for each recommendation. Recommendations for research are also included. Twelve recommendations were developed for the management of neuropathic pain after SCI. The recommendations address both pharmacologic and nonpharmacologic treatment modalities. An expert Working Group developed recommendations for the treatment of neuropathic pain after SCI that should be used to inform practice.

Community-based organizations (CBOs) and support personnel that serve marginalized members of society have the potential to be important partners in knowledge mobilization (KM). A CBO in partnership with researchers developed an event-based KM initiative to disseminate evidence-based physical activity guidelines for people with spinal cord injury. The purpose of this case study is to demonstrate a) how a CBO can implement a KM initiative and b) the effectiveness of the initiative for disseminating the guidelines to support personnel. The KM initiative consisted of 12 events about the new guidelines held within the CBO's regional areas. Evaluation of the events was guided by the RE-AIM (reach, efficacy or effectiveness, adoption, implementation, and maintenance) framework. Adoption of the events was high, with 88% of regions hosting an event. Overall fidelity to the event protocol was high among researchers (100.00% ± .00), peers (65% ± 33.74), and staff (70.00% ± 34.96). The events reached 140 support personnel who attended the events. Significant increases in support personnel's self-efficacy and intentions to promote physical activity to people with spinal cord injury were seen at Time 2 but not maintained at Time 3. Event-based KM initiatives may be an effective strategy for CBOs to disseminate information to support personnel and ensure that KM initiatives are supported by staff and delivered as intended.