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The objectives of our study were to understand researchers' current practices and perspectives on adverse event (AE) reporting in clinical trials of resistance training (RT) and to identify barriers and facilitators of AE reporting. We conducted web conference or telephone-based one-on-one semistructured interviews with 14 researchers who have published RT studies. We audio-recorded and transcribed the interviews and analyzed the data using the thematic framework method. Four themes were identified: (1) researchers lack guidance and/or motivation for rigorous AE reporting; (2) researchers who undertake AE reporting educate and value participants, use trained personnel, and implement standardized guidelines; (3) suboptimal implementation of existing AE reporting standards and the perception that available guidelines do not apply to exercise trials; and (4) acceptability and feasibility of an exercise-specific guide for AE reporting depend on its content and format. In conclusion, AE reporting methods in the field of exercise science do not align with best practice. Strategies to reduce inconsistent and suboptimal AE reporting in RT trials are urgently needed and could be based on the barriers and facilitators identified in this study.

The objective of this study was to explore the experiences and perspectives of individuals with chronic health conditions who had an adverse event (AE) as a result of resistance training (RT). We conducted web conference or telephone-based one-on-one semi-structured interviews with 12 participants with chronic health conditions who had an AE as a result of RT. Interview data were analyzed using the thematic framework method. Six themes were identified: (1) personal experiences with aging influence perceptions of RT; (2) physical and emotional consequences of AEs limit activities and define future RT participation; (3) injury recovery defines the severity of AE; (4) health conditions influence the perceived risks and benefits of participating in RT; (5) RT setting and trained supervision influence exercise behaviors and risk perceptions; and (6) experiencing a previous AE influences future exercise behavior. Despite participant awareness of the value and benefits of RT in both the context of aging and chronic health conditions, there is concern about experiencing exercise-related AEs. The perceived risks of RT influenced the participants’ decision to engage or return to RT. Consequently, to promote RT participation, the risks, not just the benefits, should be properly reported in future studies, translated, and disseminated to the public. Novelty: –To increase the quality of published research with respect to AE reporting in RT studies. –Health care providers and people with common health conditions will be able to make evidence-based decisions as to whether the benefits of RT truly outweigh the risks.

Community participation following spinal cord injury/disease (SCI/D) can be challenging due to associated primary impairments and secondary health conditions as well as difficulties navigating both the built and social-emotional environment. To improve the quality of SCI/D rehabilitation care to optimize community participation, the SCI-High Project developed a set of structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. A pan-Canadian Working Group of diverse stakeholders: (1) defined the community participation construct; (2) conducted a systematic review of available outcomes and their psychometric properties; (3) constructed a Driver diagram summarizing available evidence associated with community participation; and (4) prepared a process map. Facilitated meetings allowed selection and review of a set of structure, process and outcome indicators. The structure indicator is the proportion of SCI/D rehabilitation programs with availability of transition living setting/independent living unit. The process indicators are the proportion of SCI/D rehabilitation inpatients who experienced: (a) a therapeutic community outing prior to rehabilitation discharge; and, (b) those who received a pass to go home for the weekend. The intermediary and final outcome measures are the Moorong Self-Efficacy Scale and the Reintegration to Normal Living Index. The proposed indicators have the potential to inform whether inpatient rehabilitation for persons with SCI/D can improve self-efficacy and lead to high levels of community participation post-rehabilitation discharge.

CONTEXT Employment and Return to Work (RTW) rates following spinal cord injury/disease (SCI/D) are low due to individual and impairments characteristics, secondary health conditions, social and environmental barriers, prior work experience, workplace supports and resources, and physical or psychosocial work demands. To improve RTW, the SCI-High Project team developed a set of Employment structure, process, and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. METHODS A pan-Canadian Working Group of diverse stakeholders: (1) defined the Employment construct; (2) conducted a systematic search of available outcomes measures; (3) constructed a Driver diagram summarizing factors associated with employment. Subsequent facilitated meetings allowed for the creation of structure and process indicators, and the selection of outcome indicators. RESULTS The structure indicator is the proportion of SCI/D rehabilitation programs with an employment resource center. The process indicator is the proportion of SCI/D rehabilitation inpatients who receive an employment assessment during inpatient rehabilitation. The intermediary and final outcome measures are the Readiness for Return-to-Work Scale (RRTW) and Work Productivity and Activity Impairment (WPAI). Scale A of the RRTW for those who are unemployed and Scale B of RRTW and WPAI will be used for those who are employed. CONCLUSION This framework of Employment indicators intends to support the RTW needs of persons with SCI/D by ensuring that rehabilitation professionals provide opportunities to explore RTW within the first 18 months after rehab admission. Increased employment rates have the potential to enhance the wellbeing, health, and longevity of individuals with SCI/D.

OBJECTIVE To identify cases of spinal cord injury or disease (SCI/D) in an Ontario database of primary care electronic medical records (EMR). DESIGN A reference standard of cases of chronic SCI/D was established via manual review of EMRs; this reference standard was used to evaluate potential case identification algorithms for use in the same database. SETTING Electronic Medical Records Primary Care (EMRPC) Database, Ontario, Canada. PARTICIPANTS A sample of 48,000 adult patients was randomly selected from 213,887 eligible patients in the EMRPC database. INTERVENTIONS N/A. MAIN OUTCOME MEASURE(S) Candidate algorithms were evaluated using sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), and F-score. RESULTS 126 cases of chronic SCI/D were identified, forming the reference standard. Of these, 57 were cases of traumatic spinal cord injury (TSCI), and 67 were cases of non-traumatic spinal cord injury (NTSCI). The optimal case identification algorithm used free-text keyword searches and a physician billing code, and had 70.6% sensitivity (61.9-78.4), 98.5% specificity (97.3-99.3), 89.9% PPV (82.2-95.0), 94.7% NPV (92.8-96.3), and an F-score of 79.1. CONCLUSIONS Identifying cases of chronic SCI/D from a database of primary care EMRs using free-text entries is feasible, relying on a comprehensive case definition. Identifying a cohort of patients with SCI/D will allow for future study of the epidemiology and health service utilization of these patients.

Introduction Spinal cord injury (SCI) is a life-altering injury that leads to a complex constellation of changes in an individual's sensory, motor, and autonomic function which is largely determined by the level and severity of cord impairment. Available SCI-specific clinical practice guidelines (CPG) address specific impairments, health conditions or a segment of the care continuum, however, fail to address all the important clinical questions arising throughout an individual's care journey. To address this gap, an interprofessional panel of experts in SCI convened to develop the Canadian Spinal Cord Injury Best Practice (Can-SCIP) Guideline. This article provides an overview of the methods underpinning the Can-SCIP Guideline process. Methods The Can-SCIP Guideline was developed using the Guidelines Adaptation Cycle. A comprehensive search for existing SCI-specific CPGs was conducted. The quality of eligible CPGs was evaluated using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) instrument. An expert panel (n = 52) convened, and groups of relevant experts met to review and recommend adoption or refinement of existing recommendations or develop new recommendations based on evidence from systematic reviews conducted by the Spinal Cord Injury Research Evidence (SCIRE) team. The expert panel voted to approve selected recommendations using an online survey tool. Results The Can-SCIP Guideline includes 585 total recommendations from 41 guidelines, 96 recommendations that pertain to the Components of the Ideal SCI Care System section, and 489 recommendations that pertain to the Management of Secondary Health Conditions section. Most recommendations (n = 281, 48%) were adopted from existing guidelines without revision, 215 (36.8%) recommendations were revised for application in a Canadian context, and 89 recommendations (15.2%) were created de novo. Conclusion The Can-SCIP Guideline is the first living comprehensive guideline for adults with SCI in Canada across the care continuum.

Although self-management is linked to reduced secondary health complications (SHCs) and enhanced overall quality of life post-spinal cord injury or disease (SCI/D), it is poorly integrated into the current rehabilitation process. Promoting self-management and assuring equity in care delivery is critical. Herein, we describe the selection of Self-Management structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission.Experts in self-management across Canada completed the following tasks: (1) defined the Self-Management construct; (2) conducted a systematic search of available outcomes and their psychometric properties; and (3) created a Driver diagram summarizing available evidence related to Self-Management. Facilitated meetings allowed development and selection following rapid-cycle evaluations of proposed structure, process and outcome indicators.The structure indicator is the proportion of staff with appropriate education and training in self-management principles. The process indicator is the proportion of SCI/D inpatients who have received a self-management assessment related to specific patient self-management goal(s) within 30 days of admission. The outcome indicator is the Skill and Technique Acquisition, and Self-Monitoring and Insight subscores of the modified Health Education Impact Questionnaire.The structure indicator will heighten awareness among administrators and policy makers regarding the need to provide staff with ongoing training related to promoting self-management skill acquisition. Successful implementation of the Self-Management process and outcome indicators will promote self-management education and skill acquisition as a rehabilitation priority, allow for personalization of skills related to the individual's self-management goal(s), and empower individuals with SCI/D to manage their health and daily activities while successfully integrating into the community.

Background: The COVID-19 pandemic has created opportunity for multiple rehabilitation science learners and clinicians to critically evaluate and synthesize published research in the field of spinal cord injury (SCI) rehabilitation.Objective: To provide a step-by-step guide for rehabilitation science learners and clinicians outlining how to conduct rigorous systematic reviews in the field of SCI.Results: Steps for conducting a systematic review (SR) include: (1) formation of the SR team consisting of interprofessional experts; (2) formulation of the research question(s) with patient/population/problem, Intervention, Comparison, and Outcome (PICO) specification; (3) determination of inclusion and exclusion criteria; (4) development of SR protocol and registration; (5) development of the search strategies (database specific); (6) screening of titles and abstracts (level 1 screening), and full-texts (level 2 screening); (7) quality assessment of the included studies; (8) data extraction; (9) summary of findings and discussion; and, (10) dissemination of results.Conclusions: The enclosed ten steps for conducting SRs in SCI rehabilitation research have the potential to significantly improve the quality of evidence synthesis and the associated inferences. The importance of assembling team with diverse expertise is emphasized to assure a quality product with the potential to influence practice and inform the content of clinical practice recommendations.

Outcome measure item generation and reduction. To develop a patient reported outcome measure (PROM) addressing the impact of neurogenic bowel dysfunction (NBD) on individuals living with traumatic or nontraumatic spinal cord injury (SCI). Tertiary rehabilitation center in Toronto, Canada. A PROM based on the International Classification of Functioning, Disability and Health (ICF) framework was developed using the following steps: (a) item generation, (b) item refinement through iterative review, (c) completion of items by individuals living with SCI and NBD followed by cognitive interviewing, and (d) further item refinement, item reduction, and construction of the preliminary PROM. Following initial item generation and iterative review, the investigative team agreed on 55 initial items. Cognitive interviewing, additional revisions, and item reduction yielded an instrument comprised of 35 items; while ensuring at least two items were retained for each of the 16 previously identified challenges of living with NBD following the onset of a SCI. Scoring for the preliminary PROM ranges from 0 to 140. A preliminary PROM informed by the ICF for assessing the impact of NBD post-SCI has been devised, which can be used to inform clinicians and decision-makers on optimal ways to treat this serious secondary health complication. Future work will assess the validity and clinimetric properties of the PROM.

Context: There has been no known research investigating the association between leisure time physical activity (LTPA), loneliness, and life satisfaction among people with spinal cord injury or dysfunction (SCI/D). The relationship between these constructs is worthy of consideration given the positive health impacts of LTPA, the negative health impacts of loneliness, and heightened negative effects of loneliness on life satisfaction for individuals with SCI/D. Objectives: To examine the relationship between LTPA and loneliness, and examine loneliness as a possible mediator of the relationship between LTPA and life satisfaction among individuals with SCI/D. Design and Participants: Community dwelling individuals with SCI/D (N = 170) participated in a telephone-based survey as part of a larger project. Measures: LTPA (i.e. The Leisure Time Physical Activity Questionnaire-SCI, UCLA Loneliness Scale-3, and the Life Satisfaction Questionnaire-11 were administered to the participants. Results: Significant bivariate relationships were observed between LTPA and life satisfaction (r = .18, P = .02), LTPA and loneliness (r = –.15, P = .045), and loneliness and life satisfaction (r = –.69, P

Objective To investigate the association between prescriptions for bisphosphonates; calcium and vitamin D supplements; and receipt of dual-energy x-ray absorptiometry (DXA) screening, and incident fracture risk in men and women with a spinal cord injury (SCI) or disorder (SCID). Design Propensity-matched case-control analyses. Setting United States Veterans Affairs (VA) facilities. Participants A total of 7989 men and 849 women with an SCID included in VA administrative databases between October 1, 2005 and October 1, 2015 were identified (N=8838). Cases included 267 men and 59 women with a bisphosphonate prescription propensity matched with up to 4 controls. Interventions Not applicable. Main Outcome Measures Incident lower extremity fractures. Results There was no significant association between prescriptions for bisphosphonates and incident lower extremity fractures in men (odds ratio [OR], 1.04; 95% confidence interval [CI], 0.62-1.77) or women (OR, 1.02; 95% CI, 0.28-3.75). In men, similar null associations were seen among those who were adherent to bisphosphonate therapy (OR, 1.25; 95% CI, 0.73-2.16), were concomitant users of vitamin D and calcium and a bisphosphonate (OR, 1.05; 95% CI, 0.57-1.96), had more than 1 fracture on different dates during the study period (OR, 0.13; 95% CI, 0.02-1.16) and in those who had undergone DXA testing prior to the date of the bisphosphonate prescription and incident fracture (OR, 1.26; 95% CI, 0.69-2.32). Conclusions In men with a traumatic SCI and women with a traumatic SCID, bisphosphonate therapies for osteoporosis do not appear to significantly affect fracture risk. Adequately powered randomized controlled trials are needed to definitively demonstrate efficacy of bisphosphonates for fracture prevention in this population. There is a compelling need to identify new medications to prevent fractures in this high-risk population.

Background Preventing patient falls is a priority in tertiary spinal cord injury (SCI) rehabilitation. Falls can result in patient or staff injury, delayed rehabilitation, and hospital liability. A comprehensive overview of fall prevention/management policies and procedures in Canadian SCI rehabilitation is currently lacking. We describe and compare the fall prevention/management policies and procedures implemented in Canadian tertiary hospitals that provide SCI rehabilitation. Methods Fall prevention/management documents implemented in SCI rehabilitation at six Canadian tertiary rehabilitation hospitals across five provinces were analyzed using a document analysis. Analysis involved multiple readings of the documents followed by a content and thematic document analysis. Results Fall prevention/management policies and procedures in SCI rehabilitation were organized into three main categories: 1) pre-fall policies and procedures; 2) post-fall policies and procedures; and, 3) communication between and amongst staff, patients, and families. Pre-fall policies and procedures encompassed: a) the definition of a fall; b) fall risk assessments in SCI rehabilitation; and, c) fall prevention strategies. The post-fall policies and procedures included: a) recovery from a fall; b) incident reporting process; and, c) fall classification. Components of fall prevention/management policies and practices that differed between hospitals included the fall risk assessments, post-fall huddles, and fall classifications. Conclusions Fall prevention/management is a required organizational practice for all hospitals. Although Canadian tertiary hospitals that provide SCI rehabilitation have similar components of fall prevention/management policies and procedures, the specific requirements differ at each site. There is a need for evidence-informed, consensus-driven implementation of SCI-specific fall prevention and management procedures across Canadian SCI rehabilitation settings.

BACKGROUND: Serum alkaline phosphatase (ALP) is measured as an indicator of bone or liver disease. Bone-specific alkaline phosphatase (B-ALP) is an isoform of ALP found in the bone tissue which can predict fractures and heterotopic ossification. OBJECTIVE: The aim of this scoping review was to explore the current use of ALP and B-ALP in studies using humans or animal models of SCI, and to identify ways to advance future research using ALP and B-ALP as a bone marker after SCI. RESULTS: HUMAN STUDIES: 42 studies were included. The evidence regarding changes or differences in ALP levels in individuals with SCI compared to controls is conflicting. For example, a negative correlation between B-ALP and total femur BMD was observed in only one of three studies examining the association. B-ALP seemed to increase after administration of teriparatide, and to decrease after treatment with denosumab. The effects of exercise on ALP and B-ALP levels are heterogeneous and depend on the type of exercise performed. ANIMAL STUDIES: 11 studies were included. There is uncertainty regarding the response of ALP or B-ALP levels after SCI; levels increased after some interventions, including vibration protocols, curcumin supplementation, cycles in electromagnetic field or hyperbaric chamber. Calcitonin or bisphosphonate administration did not affect ALP levels. CONCLUSION: Researchers are encouraged to measure the bone-specific isoform of ALP rather than total ALP in future studies in humans of animal models of SCI.

Introduction Spinal cord injury (SCI) is a complex condition with substantial adverse personal, social and economic impacts necessitating evidence-based inter-professional care. To date, limited studies have assessed the quality of clinical practice guidelines (CPGs) within SCI. The aim of this study is to evaluate the quality of the development process and methodological rigour of published SCI CPGs across the care continuum from pre-hospital to community-based care. Methods Electronic health databases and indexes were searched to identify English or French language CPGs within SCI published within the last nine years with specific evidence-based recommendations applicable to the Canadian health care setting. Eligible CPGs were evaluated using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) instrument. Results A total of forty-one CPGs that met the inclusion criteria were appraised by at least four raters. There was high variability in quality. Twenty-seven CPGs achieved a good rigour of development domain score of >70%. Other standardized mean domain scores were scope and purpose (85.32%), stakeholder involvement (65.03%), clarity of presentation (84.81%), applicability (55.55%) and editorial independence (75.83%). The agreement between appraisers (intraclass correlation coefficient) was high (intraclass correlation coefficient > 0.80). Conclusion There is a paucity of CPGs that address community-based specialized rehabilitation and community reintegration. Furthermore, many CPGs only focus on a single impairment at one time point in the care continuum. As SCI is a complex condition that results in multimorbidity and requires health monitoring and intervention across the lifespan, a rigorously developed CPG that addresses high-quality, interprofessional comprehensive care is needed.

CONTEXT: Dedicated implementation efforts are critical to bridging the gaps between current practices and best practices. A quality improvement collaborative (QIC), the Spinal Cord Injury Implementation and Evaluation Quality Care Consortium (SCI IEQCC), was established to meet this need, bringing together a network of clinicians and administrators to systematically improve the quality and equity of tertiary spinal cord injury or disease (SCI/D) rehabilitation care in Ontario, Canada. METHODS: Clinicians and leaders from five tertiary SCI/D rehabilitation centers and two not-for-profit SCI/D advocacy groups comprised a network dedicated to supporting implementation of the SCI-High quality indicators in prioritized domains of SCI rehabilitation and related best practices by: (1) building capacity through implementation science education of frontline clinicians; (2) providing resources and support to empower frontline clinicians to lead quality improvement efforts within their institutions; (3) promoting wider learning through a network for sharing ideas, efforts, and experiences; and (4) collecting indicator data to facilitate provincial evaluation of goal attainment. RESULTS: Network members and sites collaborated to implement best practices within six priority domains; in 18 months, significant progress has been made in emotional wellbeing, sexual health, walking, and wheeled mobility despite disruptions due to the COVID-19 pandemic. These efforts encompass heterogeneous challenges and strategies, ranging from developing clinical skills programs, to streamlining processes, to manipulating physical space. CONCLUSION: A QIC targeting SCI/D rehabilitation demonstrates promise for advancing the implementation of best practices, building implementation science capacity across multiple sites, and for promoting collaboration amongst SCI/D rehabilitation centers and organizational partners.

Context Insufficient recruitment is a barrier to research and limits statistical power. We describe an initiative aimed to streamline recruitment and consent processes for inpatients with spinal cord injury or disease (SCI/D) via implementation of a Central Recruitment (CR) process. The CR process adhered to ethical standards, reduced participant burden, and maximized research participation. Methods In this CR process, the inpatient's nurse affirmed suitability for research approach based on fluency, cognition and health stability. A patient research liaison (PRL) was the sole contact for information regarding the research process, and introduced ongoing studies, screened for eligibility, and completed the consent process(es). Results Over five and a half years, 1,561 inpatients with SCI/D were screened for eligibility upon admission, of whom 80% (1256/1561) were deemed suitable for the PRL approach. Of those suitable for the CR process, 80% (1001/1256) agreed to discuss current research opportunities, 46% (235/516) consented to participate in one or more studies, and 86% (856/1001) agreed to future research contact. Conclusion This process adhered to ethical procedures and reduced the burden of having multiple researchers approach each individual inpatient regarding research participation, with high consent rates for low-risk studies. Future evaluation of the process scalability is underway.

Context: Urinary tract infections (UTI) are the most frequent secondary health condition following spinal cord injury or disease (SCI/D) that adversely impact overall health and quality of life, and often result in rehabilitation service interruptions, emergency department visits, and urinary sepsis. Methods: Experts in Urohealth and/or UTI recognition and management and the SCI-High Project Team used a combination of evidence synthesis and consensus methods for developing the UTI indicators. A systematic search and a Driver diagram analysis were applied to identify key factors influencing UTI. This Driver diagram guided the UTI Working Group when defining the construct, specifying the aim for the UTI SCI/D quality indicators, and developing the UTI diagnostic checklist and fever definition. Results: The structure indicator was the proportion of patients with a health care professional (i.e. family physician or urologist) able to follow-up with the patient regarding urine culture and sensitivity results within 48-72 h of collection. The Working Group knowingly adopted a single checklist for UTI diagnosis, recognizing the stark contrast in the complexity of diagnosis in acute versus community settings. The process indicator is the proportion of SCI/D rehabilitation inpatients with UTI as defined by the UTI diagnostic checklist. The outcome indicator is the proportion of SCI/D rehabilitation inpatients with inappropriate antibiotic prescription. Conclusion: UTI can be diagnosed using the developed symptoms and signs checklist. These structure, process, and outcome quality indicators will ultimately reduce inappropriate antibiotic therapy for UTI and the rising incidence of antibiotic resistance among community-dwelling individuals with chronic SCI/D.

Context: Spinal cord injury (SCI) presents numerous physiological, psychosocial, and environmental complexities resulting in significant healthcare system resource demands. Objective: To describe the current health system surveillance mechanisms in Ontario, Canada and highlight gaps in health surveillance among adults with SCI across their lifespan. Methods: A review of administrative data sources capturing SCI-specific information took place via internet searching and networking among SCI rehabilitation and health services experts with emphasis on functionality, health service utilization, and quality of life data. Results: The review identified a distinct paucity of data elements specific to the health surveillance needs of individuals with SCI living in the community. The gaps identified are: (1) a lack of data usability; (2) inadequate linkage between available datasets; (3) inadequate/infrequent reporting of outcomes; (4) a lack of relevant content/patient-reported outcomes; and, (5) failure to incorporate additional data sources (e.g. Insurance datasets). Conclusion: Currently, SCI-specific health data is disproportionately weighted towards the first 3-6 months post injury with detailed data regarding pre-hospital care, acute management and rehabilitation, but little existing infrastructure supporting community-based health surveillance. Given this reality, the bolstering of meaningful community health surveillance of this population across the lifespan is needed. Addressing the identified gaps in health surveillance must inform the creation of a comprehensive community health dataset incorporating patient-reported outcome measures and enabling linkage with existing administrative and/or clinical databases. A future harmonized data surveillance strategy would, in turn, positively impact function, health services, resource utilization and health-related quality of life surveillance.

Context: Although spinal cord injury or disease (SCI/D) results in complex biological and psychosocial impairments that adversely impact an individual’s overall quality of sexual life, sexual health is poorly integrated into the current rehabilitation processes. Therefore, it is vital to promote sexual health as a rehabilitation priority. Herein, we describe the selection of Sexual Health structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. Methods: Experts in sexual health and the SCI-High team identified key factors that influence the sexual health outcomes of rehabilitation interventions to inform Driver diagram development. This diagram informed the selection and development of indicators to promote a permissive environment for discussion of sexual health issues among regulated health care professionals (HCPs). A review of literature and psychometric properties of measurement tools facilitated final indicators selection. Results: The structure indicator is the proportion of rehabilitation HCPs who have completed annual preliminary sexual health training. The process indicator is the proportion of SCI/D inpatients that have a documented introduction to available local sexual health resources. The outcome indicator is a sexual health patient questionnaire used to assess sexual health patient outcomes and sexual health information/educational needs. Rapid-cycle piloting verified that the indicator tools developed are feasible for implementation. Conclusion: Successful implementation of the Sexual Health structure, process and outcome indicators will promote a permissive environment to enable open discussion, and lead to provision of equitable and optimal care related to sexual health following SCI/D. This will ultimately advance sexual health rehabilitation across the nation.

Background: Due to the earlier discharge of individuals with spinal cord injury (SCI), family caregivers are often left with limited time for learning caregiving skills, and they usually feel unprepared to undertake the caregiver role. Objective: Considering the key role of family caregivers in maintaining the overall health and well-being of the individual with SCI, the objective of this study was to determine the breadth of skills needed by family caregivers to enhance their competency in caring for individuals with SCI living in the community. Methods: A qualitative descriptive approach was used with semi-structured interviews. Thematic analysis was used to determine key themes arising from the experiences of individuals with SCI ( n= 19) and their family members ( n = 15). Results: Twenty-nine SCI family caregiving skills were identified and grouped into six caregiving processes signifying the multiple dimensions of the SCI caregiving role. These include monitoring and managing physical health and secondary health conditions, providing for psychosocial needs, decision making, time management, being flexible, and navigating the health and social services system. Conclusion: The current study demonstrated that development of multiple caregiving skills is crucial to enhance family members' competency in caregiving. These findings should further alert health care professionals that assessment of caregiving skills at regular intervals is necessary to help caregivers achieve mastery in situations where they are facing caregiving difficulties. Future programs need to be designed to include the skills that family caregivers need and use in real-life caregiving situations.

Background Following spinal cord injury (SCI), family members are often called upon to undertake the caregiving role. This change in the nature of the relationship between the individuals with SCI and their families can lead to emotional, psychological, and relationship challenges. There is limited research on how individuals with SCI and their family caregivers adapt to their new lives post-injury, or on which dyadic coping strategies are used to maintain relationships. Thus, the objectives of this study were to obtain an in-depth understanding of 1) the experiences and challenges within a caregiving relationship post-SCI among spouses, as well as parents and adult children; and 2) the coping strategies used by caregivers and care recipients to maintain/rebuild their relationships. Methods A qualitative descriptive approach with an exploratory design was used. Semi-structured face-to-face and telephone interviews were conducted. Thematic analysis was used to identify key themes arising from individuals with SCI’s (n = 19) and their family caregivers’ (n = 15) experiences. Results Individuals with SCI and family caregivers spoke in-depth and openly about their experiences and challenges post-injury, with two emerging themes (including subsequent sub-themes). The first theme of deterioration of relationship, which reflects the challenges experienced/factors that contributed to disintegration in a relationship post-injury, included: protective behaviours, asymmetrical dependency, loss of sex and intimacy, and difficulty adapting. The second theme of re-building/maintaining the relationship, which reflects the strategies used by dyads to adjust to the changes within the relationship brought upon by the injury, included: interdependence, shifting commonalities, adding creativity into routine, and creating a new normal. Conclusions These findings should alert healthcare professionals and peer support groups as to the need for possible education and training (e.g., coping strategies, communication skills training) as well as counseling prior to discharge to assist individuals with SCI and family caregivers with adaptation to a new life post-injury.

To describe objective social disconnectedness and perceived social isolation post-spinal cord injury/dysfunction (SCI/D), and to examine associations among social disconnectedness and social isolation by sociodemographic and clinical characteristics.A telephone-based questionnaire was administered to 170 community dwelling individuals with a SCI/D. Social disconnectedness was measured by social network size, composition, and frequency of contact. Social isolation was measured using the revised three item UCLA Loneliness Scale.Of the 170 participants, the majority were men (This study highlights the vulnerability for perceived social isolation among persons with SCI/D. The size of network does not seem to matter as much as the frequency and quality of social interactions. Findings reinforce the complexity of social disconnectedness and the importance in understanding the various indicators of social disconnectedness as they relate to social isolation. IMPLICATIONS FOR REHABILITATION Social relationships have been shown to be a vital component of optimal health and well-being. Individuals with a spinal cord injury/dysfunction are faced with a number of challenges in developing and maintaining social relationships and community participation. Rehabilitation professionals should encourage opportunities for social inclusion, employment and community participation to optimize health and well-being for this population.

Purpose: Family members make an important contribution to informal and formal care, as well as the overall health and wellbeing of individuals with spinal cord injury. Caregiving often results in n...

Objectives: To identify and classify tools for assessing the influence of neurogenic bowel dysfunction (NBD) on quality of life (QoL) after spinal cord injury (SCI). Methods: In this systematic review, MEDLINE/PubMed, CINAHL, and PsycInfo were searched to identify studies assessing the influence of NBD on QoL (or related construct) after SCI. Two independent reviewers screened titles and abstracts, and both reviewers classified tools as subjective or objective according to Dijkers' theoretical QoL framework. Results: Seventy-two studies were identified, and 35 studies met the inclusion criteria. Five objective measures assessed the influence of NBD on QoL, which were validated for use in SCI, but no measure was condition-specific to NBD. Eight measures were classified as subjective tools; two had an established reliability and validity for SCI while six had some psychometric evidence for use in the SCI population. Five subjective measures (NBD score, Burwood QoL Questionnaire, Impediments to Community Integration [ICI] Scale, SCI-QoL Bowel Management Difficulties, and Survey of Neurogenic Bowel Characteristics) were developed specifically for SCI. The NBD score showed sensitivity to the influence of NBD on QoL in experimental trials. Conclusion: Thirteen tools assessed the influence of NBD on QoL in SCI. Although not developed specifically for SCI, the Health Utility Index (HUI-III) was the only tool identified that provided data on “QoL as utility” on the impact of NBD. The validated NBD score was the only condition-specific tool to assess QoL as “subjective well-being.” Further validation of existing tools could help to inform practice and policy related to resource allocation for bowel care post SCI.

CONTEXT: Endocrine-metabolic disease (EMD) is associated with functional disability, social isolation, hospitalization and even death in individuals living with a chronic spinal cord injury (SCI). There is currently very low-quality evidence that rehabilitation interventions can reduce EMD risk during chronic SCI. Non-randomized trials and alternative study designs are excluded from traditional knowledge synthesis. OBJECTIVE: To characterize evidence from level 3–4 studies evaluating rehabilitation interventions for their effectiveness to improve EMD risk in community-dwelling adults with chronic SCI. METHODS: Systematic searches of MEDLINE PubMed, EMBASE Ovid, CINAHL, Cochrane Database of Systematic Reviews, and PsychInfo were completed. All longitudinal trials, prospective cohort, case–control studies, and case series evaluating the effectiveness of rehabilitation/therapeutic interventions to modify/associate with EMD outcomes in adults with chronic SCI were eligible. Two authors independently selected studies and abstracted data. Mean changes from baseline were reported for EMD outcomes. The Downs and Black Checklist was used to rate evidence quality. RESULTS: Of 489 articles identified, 44 articles (N = 842) were eligible for inclusion. Individual studies reported statistically significant effects of electrical stimulation-assisted training on lower-extremity bone outcomes, and the combined effects of exercise and dietary interventions to improve body composition and cardiometabolic biomarkers (lipid profiles, glucose regulation). In contrast, there were also reports of no clinically important changes in EMD outcomes, suggesting lower quality evidence (study bias, inconsistent findings). CONCLUSION: Longitudinal multicentre pragmatic studies involving longer-term exercise and dietary intervention and follow-up periods are needed to fully understand the impact of these rehabilitation approaches to mitigate EMD risk. Our broad evaluation of prospective cohort and case–control studies provides new perspectives on alternative study designs, a multi-impairment paradigm approach of studying EMD outcomes, and knowledge gaps related to SCI rehabilitation.

Introduction: Impaired balance leads to falls in individuals with motor incomplete spinal cord injury or disease (iSCI/D). Reactive stepping is a strategy used to prevent falls and Perturbation-based Balance Training (PBT) can improve this ability.Objective: The objective of this study was to determine if PBT results in greater improvements in reactive stepping ability than frequency-matched Conventional Intensive Balance Training (CIBT) in adults with iSCI/D.Design: Randomized clinical trial.Setting: Tertiary SCI/D rehabilitation center.Participants: Twenty-one adults with chronic (>1 year) iSCI/D were randomized. Due to one drop out 20 participants completed the study.Methods: Participants were randomly allocated to complete either PBT or CIBT three times per week for 8 weeks. Both programs included challenging static and dynamic balance tasks, but the PBT group also experienced manual external balance perturbations.Main Outcome Measures: Assessments of reactive stepping ability using the Lean-and-Release test were completed at baseline, and after 4 and 8 weeks of training, and 3 and 6 months after training completion. A blinded assessor evaluated secondary outcomes.Results: Twenty-five participants were screened and 21 consented; one withdrew. Ten PBT and 10 CIBT participants were included in analyses. Across all participants there were improvements in reactive stepping ability (p = 0.049), with retention of improvements at follow up assessments. There were no differences in reactive stepping ability between groups [median (interquartile range): PBT 0.08 (0.68); CIBT 0.00 (0.22)]. One participant in the PBT group experienced a non-injurious fall during training.Conclusions: Balance training is beneficial for individuals with iSCI/D, but the addition of manual perturbations (i.e., PBT) did not prove advantageous for performance on a measure of reactive stepping ability.Clinical Trial Registration:www.ClinicalTrials.gov, identifier: NCT02960178.

BACKGROUND Simple visualizations in health research data, such as scatter plots, heat maps, and bar charts, typically present relationships between 2 variables. Interactive visualization methods allow for multiple related facets such as numerous risk factors to be studied simultaneously, leading to data insights through exploring trends and patterns from complex big health care data. The technique presents a powerful tool that can be used in combination with statistical analysis for knowledge discovery, hypothesis generation and testing, and decision support. OBJECTIVE The primary objective of this scoping review is to describe and summarize the evidence of interactive visualization applications, methods, and tools being used in population health and health services research (HSR) and their subdomains in the last 15 years, from January 1, 2005, to March 30, 2019. Our secondary objective is to describe the use cases, metrics, frameworks used, settings, target audience, goals, and co-design of applications. METHODS We adapted standard scoping review guidelines with a peer-reviewed search strategy: 2 independent researchers at each stage of screening and abstraction, with a third independent researcher to arbitrate conflicts and validate findings. A comprehensive abstraction platform was built to capture the data from diverse bodies of literature, primarily from the computer science and health care sectors. After screening 11,310 articles, we present findings from 56 applications from interrelated areas of population health and HSR, as well as their subdomains such as epidemiologic surveillance, health resource planning, access, and use and costs among diverse clinical and demographic populations. RESULTS In this companion review to our earlier systematic synthesis of the literature on visual analytics applications, we present findings in 6 major themes of interactive visualization applications developed for 8 major problem categories. We found a wide application of interactive visualization methods, the major ones being epidemiologic surveillance for infectious disease, resource planning, health service monitoring and quality, and studying medication use patterns. The data sources included mostly secondary administrative and electronic medical record data. In addition, at least two-thirds of the applications involved participatory co-design approaches while introducing a distinct category, embedded research, within co-design initiatives. These applications were in response to an identified need for data-driven insights into knowledge generation and decision support. We further discuss the opportunities stemming from the use of interactive visualization methods in studying global health; inequities, including social determinants of health; and other related areas. We also allude to the challenges in the uptake of these methods. CONCLUSIONS Visualization in health has strong historical roots, with an upward trend in the use of these methods in population health and HSR. Such applications are being fast used by academic and health care agencies for knowledge discovery, hypotheses generation, and decision support. INTERNATIONAL REGISTERED REPORT RR2-10.2196/14019

Wearable cameras have great potential for producing novel outcome measures of upper limb (UL) function and guiding care in individuals with cervical spinal cord injury (cSCI) living in the community. However, little is known about the perspectives of individuals with cSCI on the potential adoption of this technology.To analyze feedback from individuals with cSCI regarding the use of wearable cameras to record daily activities at home, in order to define guidelines for improving the design of this technology and fostering its implementation to optimize UL rehabilitation.Mixed-methods study.Thirteen adults with cSCI C3-C8 AIS A-D impairment.Interview including survey and semi-structured questions.Participants felt that this technology can provide naturalistic information regarding hand use to clinicians and researchers, which in turn can lead to better assessments of UL function and optimized therapies. Participants described the technology as easy-to-use but often reported discomfort that prevented them from conducting long recordings of fully natural activities. Privacy concerns included the possibility to capture household members and personal information displayed on objects (e.g. smartphones).We provide the first set of guidelines to help researchers and therapists understand which steps need to be taken to translate wearable cameras into outpatient care and community-based research for UL rehabilitation. These guidelines include miniaturized and easy-to-wear cameras, as well as multiple measures for preventing privacy concerns such as avoiding public spaces and providing control over the recordings (e.g. start and stop the recordings at any time, keep or delete a recording).

To advance the understanding of perceived social isolation among persons with spinal cord injury (SCI), the objectives of the present study were to explore: (1) experiences of perceived social isolation and (2) factors that contribute to perceived social isolation.Interpretive description qualitative methodology was used to conduct semi-structured interviews with 30 individuals with SCI from across Ontario (Canada) from November 2016 to August 2017. Data were analyzed using thematic analysis.Participants identified disruption to social networks that seemed to impact perceived social isolation. Five major themes were identified: (1) impact on structure and frequency of social network; (2) importance of feeling heard; (3) importance of employment, hobbies, and sports; (4) need to improve physical accessibility and built environment; and (5) individual characteristics. Changes in quality of social networks, rather than size, contributed to greater feelings of perceived social isolation. The built environment, maintenance of employment, hobbies, and sports, social media, and technology use, as well as individual traits, were also found to impact perceived social isolation.Future research should focus on the development of programs to help maintain or improve social network quality for persons with SCI to minimize the impact of perceived social isolation.IMPLICATIONS FOR REHABILITATIONPerceived social isolation, resulting from physical and environmental barriers, is a challenge that is faced by many individuals who are living in the community with a spinal cord injury (SCI).Rehabilitation and community programs should utilize an individualized approach to find solutions to challenges faced by this population to prevent the effects of perceived social isolation.Education on how to adapt to changes in social network, together with the provision of access to peer-to-peer support groups, and SCI specific return to work or leisure programs, is recommended as an essential component of rehabilitation.

To examine the associations among social networks and loneliness on health and life satisfaction in adults with chronic spinal cord injury/dysfunction (SCI/D).Cross-sectional telephone survey study.Tertiary spinal cord injury rehabilitation center in Ontario, Canada.Community-dwelling adults with chronic SCI/D (N=170).Not applicable.The main outcome measures were the Short-Form 36 to assess health and the Life Satisfaction-11 to assess life satisfaction.A hierarchical regression model predicting physical health accounted for 24% (P.001) of the variance. The only social network variable to significantly contribute to the model was having a higher proportion of network members living in one's household (P.05). A model predicting mental health accounted for 44% (P.001) of the variance, with having a higher proportion of network members living in one's household (P.05) and lower feelings of loneliness (P.001) associated with better mental health. Finally, the model predicting life satisfaction accounted for 62% (P.001) of the variance, with lower greater levels of social network intimacy (P.01) and lower feelings of loneliness (P.001) being significant predictors.These findings highlight the importance of having access to network members in one's home for better physical and mental health after SCI/D as well as the negative association between loneliness and mental health and life satisfaction. There is a need for approaches to ensure that people with SCI/D in the community feel supported to mitigate feelings of loneliness to optimize their health and wellbeing.