Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol.

INTRODUCTION: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives. METHODS AND ANALYSIS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives. PROTOCOL REGISTRATION: https://osf.io/beqjr.

Introducing JMIR Rehabilitation and Assistive Technologies: A Venue for Publishing Interdisciplinary Research on the Development, Implementation, and Evaluation of Health Innovations and Emerging Technologies in the Field of Rehabilitation.

Rehabilitation supports the affected individual and their caregivers in managing the health condition and its associated symptoms, altering the environment to accommodate needs, adapting tasks for safe and independent performance, facilitating self-management, and using assistive devices and technologies. JMIR Rehabilitation and Assistive Technologies focuses on pragmatic yet rigorous and impactful science that reports on the development, implementation, and evaluation of health innovations and interventions as well as emerging technologies in the field of rehabilitation.

Evaluating the impact of movement tracking feedback on engagement with home exercise programmes of children with cerebral palsy using a new therapy app: a protocol for a mixed-methods single-case experimental design with alternating treatments.

INTRODUCTION: Children with cerebral palsy (CP) are prescribed home exercise programmes (HEPs) to increase the frequency of movement practice, yet adherence to HEPs can be low. This paper outlines the protocol for a single-case experimental design (SCED) with alternating treatments, using a new home therapy exercise application, Bootle Boot Camp (BBCamp), offered with and without movement tracking feedback. This study will explore the impact of feedback on engagement, movement quality, lower limb function and family experiences to help understand how technology-supported HEPs should be translated and the added value, if any, of movement tracking technology. METHODS AND ANALYSIS: In this explanatory sequential mixed-methods study using a SCED, 16 children with CP (aged 6-12 years, Gross Motor Function Classification System levels I-II) will set lower limb goals and be prescribed an individualised HEP by their physiotherapist to complete using BBCamp on their home television equipped with a three-dimensional camera-computer system. Children will complete four weekly exercise sessions over 6 weeks. Children will be randomised to 1 of 16 alternating treatment schedules where BBCamp will provide or withhold feedback during the first 4 weeks. The version of BBCamp that results in the most therapeutic benefit will be continued for 2 final weeks. Goals will be re-evaluated and families interviewed. The primary outcome is adherence (proportion of prescribed exercise repetitions attempted) as a measure of behavioural engagement. Secondary outcomes are affective and cognitive engagement (smiley face ratings), exercise fidelity, lower limb function, goal achievement and participant experiences. SCED data will be analysed using visual and statistical methods. Quantitative and qualitative data will be integrated using joint displays. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Research Ethics Boards at Bloorview Research Institute and the University of Toronto. Results will be distributed through peer-reviewed journals and scientific conferences. TRIAL REGISTRATION NUMBER: NCT05998239; pre-results.

A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study.

BACKGROUND: Studies have highlighted significant challenges associated with the transition from pediatric to adult health and social care services for youth living with childhood-acquired disabilities and their caregivers. Patient navigation has been proposed as an effective transitional care intervention. Better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted. OBJECTIVE: This study aims to describe the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, Compassionate Online Navigation to Enhance Care Transitions (CONNECT). METHODS: A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (16/23, 70%) and their caregivers (7/23, 30%). Semistructured interviews and focus groups were conducted, digitally recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software (Lumivero). RESULTS: Participants desired a program that incorporated (1) self-directed learning, (2) a library of reliable health and community resources, and (3) emotional and social supports. On the basis of participants' feedback, CONNECT was deemed satisfactory, as it was believed that the program would help support appropriate transition care through the provision of trusted health-related information. Participants highlighted the need for options to optimize confidentiality in their health and social care and the choice to remain anonymous to other participants. CONCLUSIONS: Web-based patient navigation programs such as CONNECT may deliver peer support that can improve the quality and experience of care for youth, and their caregivers, transitioning from pediatric to adult care through personalized support, health care monitoring, and health and social care resources. Future studies are needed to test the feasibility, acceptability, usability, use, and effectiveness of CONNECT among youth with childhood-onset disabilities.

Adverse events associated with the delivery of telerehabilitation: A scoping review protocol.

OBJECTIVE: This scoping review aims to map the existing research on adverse events during the delivery of telerehabilitation. INTRODUCTION: Telerehabilitation, a subset of telemedicine, has gained traction during the COVID-19 pandemic as a means to deliver rehabilitation services remotely. However, there exists a research gap as there has yet to be any scoping review, systematic review, or meta-analysis published to identify and summarize the current primary research on adverse events related to telerehabilitation as a whole. It is important to understand how adverse events, such as falls during physiotherapy or aspiration pneumonia during speech language pathology sessions, are associated with telerehabilitation delivery. This will help to identify key limitations for optimizing telerehabilitation delivery by allowing for the development of key risk-mitigation measures and quality indicators. It can also help improve the uptake of telerehabilitation among clinicians and patients. This review aims to fill this research gap by conducting a search of published literature on adverse events in telerehabilitation. Anticipated key findings of this scoping review include identifying the characteristics and frequencies of adverse events during telerehabilitation, the patient populations and types of telerehabilitation associated with the most adverse events, and the quality of reporting of adverse events. METHODS: The review follows the Joanna Briggs Institute (JBI) methodological framework and adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines. The review protocol has been registered and published on Open Science Framework. A comprehensive search strategy was implemented across multiple databases (MEDLINE ALL, EMBASE, APA PsycINFO, CENTRAL, and CINAHL). All stages (screening, extraction, and synthesis) will be conducted in duplicate and independently, with data extraction following the TIDieR framework, along with authors, year of publication (before or after COVID), population and sample size, and specific mode/s of telerehabilitation delivery. For synthesis, data will be summarized quantitatively using numerical counts and qualitatively via content analysis. The data will be grouped by intervention type and by type of adverse event. INCLUSION CRITERIA: This scoping review will include qualitative and quantitative studies published between 2013 and 2023, written in English, and conducted in any geographic area. All modes of telerehabilitation delivery (asynchronous, synchronous, or hybrid) will be included. Systematic reviews, meta-analyses, commentaries, protocols, opinion pieces, conference abstracts, and case series with fewer than five participants will be excluded.

Co-design for stroke intervention development: Results of a scoping review.

BACKGROUND: Co-design methodology seeks to actively engage end-users in developing interventions. It is increasingly used to design stroke interventions; however, limited guidance exists, particularly with/for individuals with stroke who have diverse cognitive, physical and functional abilities. Thus, we describe 1) the extent of existing research that has used co-design for stroke intervention development and 2) how co-design has been used to develop stroke interventions among studies that explicitly used co-design, including the rationale, types of co-designed stroke interventions, participants involved, research methodologies/approaches, methods of incorporating end-users in the research, co-design limitations, challenges and potential strategies reported by researchers. MATERIALS AND METHODS: A scoping review informed by Joanna Briggs Institute and Arksey & O'Malley methodology was conducted by searching nine databases on December 21, 2022, to locate English-language literature that used co-design to develop a stroke intervention. Additional data sources were identified through a hand search. Data sources were de-duplicated, and two research team members reviewed their titles, abstracts and full text to ensure they met the inclusion criteria. Data relating to the research objectives were extracted, analyzed, and reported numerically and descriptively. RESULTS: Data sources used co-design for stroke intervention development with (n = 89) and without (n = 139) explicitly using the term 'co-design.' Among studies explicitly using co-design, it was commonly used to understand end-user needs and generate new ideas. Many co-designed interventions were technology-based (65%), and 48% were for physical rehabilitation or activity-based. Co-design was commonly conducted with multiple participants (82%; e.g., individuals with stroke, family members/caregivers and clinicians) and used various methods to engage end-users, including focus groups and workshops. Limitations, challenges and potential strategies for recruitment, participant-engagement, contextual and logistical and ethics of co-designed interventions were described. CONCLUSIONS: Given the increasing popularity of co-design as a methodology for developing stroke interventions internationally, these findings can inform future co-designed studies.

Experiences of people with multiple sclerosis and clinicians in using cognitive behavioural therapies for hidden symptoms: a systematic review and meta-aggregation.

PURPOSE: Cognitive behavioural therapies (CBTs) are a standard of care for treatment of many 'hidden symptoms' in people with MS (PwMS), such as stress, depression, and fatigue. However, these interventions can vary widely in formatting and may not be tailored for PwMS. To optimize CBTs for MS, understanding the experiences of PwMS and clinicians is essential. This systematic review and meta-aggregation synthesizes existing qualitative data on stakeholder perspectives of CBTs for PwMS. METHODS: Systematic searches across five major electronic databases were conducted. Studies reporting qualitative data were identified. Two reviewers performed screening, quality assessment, data extraction, and certainty of evidence assessments. Meta-aggregation was performed as per the Joanna Briggs Institute approach, entailing qualitative data extraction, developing categories, and synthesizing overall findings. RESULTS: Twenty-eight studies were included in this review, comprising data from 653 PwMS and 47 clinicians. In the meta-aggregation, 122 qualitative results were extracted and grouped into nine categories. Categories were then combined into six synthesized findings: (1) setting the context-life with MS, (2) reasons for participating in CBTs, (3) acceptability of and experiences with participating in CBTs, (4) perceived benefits of CBTs, (5) perceived challenges with CBTs, and (6) suggestions to improve CBTs for PwMS. CONCLUSIONS: A range of benefits including psychological, social, and lifestyle improvements were reported, but varied based on the design of the CBT intervention. Future CBT interventions should be tailored to participant needs, delivered in group settings, offer online options, and be delivered by a trained facilitator familiar with MS. Further exploration of the ideal CBT design for PwMS, as well as engagement with caregivers and clinicians treating MS, is warranted.

A scoping review reveals candidate quality indicators of knowledge translation and implementation science practice tools.

OBJECTIVES: To identify candidate quality indicators from existing tools that provide guidance on how to practice knowledge translation and implemenation science (KT practice tools) across KT domains (dissemination, implementation, sustainability, and scalability). STUDY DESIGN AND SETTING: We conducted a scoping review using the Joanna Briggs Institute Manual for Evidence Synthesis. We systematically searched multiple electronic databases and the gray literature. Documents were independently screened, selected, and extracted by pairs of reviewers. Data about the included articles, KT practice tools, and candidate quality indicators were analyzed, categorized, and summarized descriptively. RESULTS: Of 43,060 titles and abstracts that were screened from electronic databases and gray literature, 850 potentially relevant full-text articles were identified, and 253 articles were included in the scoping review. Of these, we identified 232 unique KT practice tools from which 27 unique candidate quality indicators were generated. The identified candidate quality indicators were categorized according to the development (n = 17), evaluation (n = 5) and adaptation (n = 3) of the tools, and engagement of knowledge users (n = 2). No tools were identified that appraised the quality of KT practice tools. CONCLUSIONS: The development of a quality appraisal instrument of KT practice tools is needed. The results will be further refined and finalized in order to develop a quality appraisal instrument for KT practice tools.

Social and Structural Drivers of Health and Transition to Adult Care.

CONTEXT: Youth with chronic health conditions experience challenges during their transition to adult care. Those with marginalized identities likely experience further disparities in care as they navigate structural barriers throughout transition. OBJECTIVES: This scoping review aims to identify the social and structural drivers of health (SSDOH) associated with outcomes for youth transitioning to adult care, particularly those who experience structural marginalization, including Black, Indigenous, and 2-spirit, lesbian, gay, bisexual, transgender, queer or questioning, and others youth. DATA SOURCES: Medline, Embase, CINAHL, and PsycINFO were searched from earliest available date to May 2022. STUDY SELECTION: Two reviewers screened titles and abstracts, followed by full-text. Disagreements were resolved by a third reviewer. Primary research studying the association between SSDOH and transition outcomes were included. DATA EXTRACTION: SSDOH were subcategorized as social drivers, structural drivers, and demographic characteristics. Transition outcomes were classified into themes. Associations between SSDOH and outcomes were assessed according to their statistical significance and were categorized into significant (P < .05), nonsignificant (P > .05), and unclear significance. RESULTS: 101 studies were included, identifying 12 social drivers (childhood environment, income, education, employment, health literacy, insurance, geographic location, language, immigration, food security, psychosocial stressors, and stigma) and 5 demographic characteristics (race and ethnicity, gender, illness type, illness severity, and comorbidity). No structural drivers were studied. Gender was significantly associated with communication, quality of life, transfer satisfaction, transfer completion, and transfer timing, and race and ethnicity with appointment keeping and transfer completion. LIMITATIONS: Studies were heterogeneous and a meta-analysis was not possible. CONCLUSIONS: Gender and race and ethnicity are associated with inequities in transition outcomes. Understanding these associations is crucial in informing transition interventions and mitigating health inequities.

Development of the Preferred Components for Co-Design in Research Guideline and Checklist: Protocol for a Scoping Review and a Modified Delphi Process.

BACKGROUND: There is increasing evidence that co-design can lead to more engaging, acceptable, relevant, feasible, and even effective interventions. However, no guidance is provided on the specific designs and associated methods or methodologies involved in the process. We propose the development of the Preferred Components for Co-design in Research (PRECISE) guideline to enhance the consistency, transparency, and quality of reporting co-design studies used to develop complex health interventions. OBJECTIVE: The aim is to develop the first iteration of the PRECISE guideline. The purpose of the PRECISE guideline is to improve the consistency, transparency, and quality of reporting on studies that use co-design to develop complex health interventions. METHODS: The aim will be achieved by addressing the following objectives: to review and synthesize the literature on the models, theories, and frameworks used in the co-design of complex health interventions to identify their common elements (components, values or principles, associated methods and methodologies, and outcomes); and by using the results of the scoping review, prioritize the co-design components, values or principles, associated methods and methodologies, and outcomes to be included in the PRECISE guideline. RESULTS: The project has been funded by the Canadian Institutes of Health Research. CONCLUSIONS: The collective results of this project will lead to a ready-to-implement PRECISE guideline that outlines a minimum set of items to include when reporting the co-design of complex health interventions. The PRECISE guideline will improve the consistency, transparency, and quality of reports of studies. Additionally, it will include guidance on how to enact or enable the values or principles of co-design for meaningful and collaborative solutions (interventions). PRECISE might also be used by peer reviewers and editors to improve the review of manuscripts involving co-design. Ultimately, the PRECISE guideline will facilitate more efficient use of new results about complex health intervention development and bring better returns on research investments. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/50463.

Understanding data collection strategies for the ethical inclusion of older adults with disabilities in transitional care research: A scoping review protocol.

INTRODUCTION: A growing body of evidence suggests that older adults are particularly vulnerable to poor care as they transition across care environments. Thus, they require transitional care services as they transition across healthcare settings. To help make intervention research meaningful to the older adults the intervention aims to serve, many researchers aim to study their experiences, by actively involving them in research processes. However, collecting data from older adults with various forms of disability often assumes that the research methods selected are appropriate for them. This scoping review will map the evidence on research methods to collect data from older adults with disabilities within the transitional care literature. METHODS: The proposed scoping review follows the framework originally described by the Joanna Briggs Institute (JBI) Manual: (1) developing a search strategy, (2) evidence screening and selection, (3) data extraction; and (4) analysis. We will include studies identified through a comprehensive search of peer-reviewed and empirical literature reporting on research methods used to elicit the experiences of older adults with disabilities in transitional care interventions. In addition, we will search the reference lists of included studies. The findings of this review will be narratively synthesized. The Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews will guide the reporting of the methods and results. DISCUSSION: The overarching goal of this study is to develop strategies to assist the research community in increasing the inclusion of older adults with disabilities in transitional care research. The findings of this review will highlight recommendations for research to inform data collection within future intervention research for older adults with disabilities. Study findings will be disseminated via a publication and presentations.

Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review.

PURPOSE: To identify the nature and extent of the evidence on psychological interventions among individuals with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). MATERIALS AND METHODS: Eligible studies reported on psychological interventions for individuals of all ages with EDS and/or HSD. All studies published in English were included, with no restrictions to publication year or status. MEDLINE, CINAHL, EMBASE, and PsycINFO were searched. Two reviewers independently screened studies and abstracted data. RESULTS: This scoping review included 10 studies reporting on EDS, HSD, or both. Only cohort studies and case studies were identified. Four studies investigated Cognitive Behavioural Therapy (CBT), one investigated Dialectical Behavioural Therapy (DBT), two investigated psychoeducation, two investigated Intensive Interdisciplinary Pain Treatment (IIPT), and one investigated Acceptance Commitment Therapy (ACT). Interventions targeted pain management, self-destructive behaviours, and related psychological issues (e.g., depression/anxiety). Sample sizes were small (n < 50) for most studies and interventions were generally poorly described. CONCLUSIONS: There is a critical need for high-quality research surrounding psychological interventions for individuals with EDS/HSD. Psychological interventions for these individuals are understudied and existing studies lack validity. Researchers should investigate psychological interventions for individuals with all types of EDS/HSD with high-quality studies to validate findings from the existing studies.

Understanding a videogame home intervention for children with hemiplegia: a mixed methods multi-case study.

Introduction: Access to rehabilitation therapies is a salient and growing issue for children with cerebral palsy (CP) and their families, motivating interest in home-based interventions. Bootle Blast is a low-cost, movement-tracking videogame that can be used at home to encourage upper limb (UL) functional exercise tailored to each child's abilities and therapy goals. The study objectives were to: 1) Establish the extent to which children achieve their self-directed play-time goal over a 12-week intervention, 2) Measure changes in UL motor outcomes, and 3) Explore participants' experiences of using Bootle Blast at home. Methods: Mixed methods case series study of four children with hemiplegic cerebral palsy (HCP), each with a participating parent. Participants played Bootle Blast at home for 12 weeks. Study assessments occurred at baseline, post-intervention and four week follow up. A post-intervention interview explored participants' experiences. Game-logs provided play time and progress data. Results: Three of four participants (8-13 yrs., Manual Ability Classification Level I-II) completed the intervention. One dropped out at week 6. Play-time goals were achieved in most weeks, with two of four children surpassing their overall intervention goals. Outcomes varied across the three participants, however consistent improvements were observed on the Canadian Occupational Performance Measure and the Box and Blocks Test. Inductive analysis generated four main themes: 1) Intrinsic motivators fostered play engagement, 2) Virtual play for real-world gains, 3) Therapy on demand (at home), and 4) Shifting the onus from the parent to the game. Integration of qualitative and quantitative data was important for interpreting play patterns/usage and clinical outcomes. Discussion: This mixed methods study describes a novel videogaming intervention designed for home-rehabilitation for children with HCP and provides preliminary evidence to guide future study design and research. Clinical Trial Registration: [https://clinicaltrials.gov/ct2/show/NCT04009031?recrs=h&cond=Cerebral+Palsy&cntry=CA&city=Toronto&draw=2&rank=1], identifier [NCT04009031].

Stroke Experiences and Unmet Needs of Individuals of African Descent Living in High-Income Economy Countries: a Qualitative Meta-Synthesis.

BACKGROUND: Stroke service disparities experienced by individuals of African descent highlight the need to optimize services. While qualitative studies have explored participants' unique experiences and service needs, a comprehensive synthesis is lacking. To address current knowledge gaps, this review aimed to synthesize existing literature on the experiences of individuals of African descent impacted by a stroke living in high-income economy countries in terms of stroke prevention, management, and care. METHODS: A qualitative meta-synthesis incorporating a meta-study approach was conducted to obtain comprehensive and interpretive insights on the study topic. Four databases were searched to identify qualitative English-language studies published in the year 2022 or earlier on the experiences of adults of African descent who were at risk or impacted by a stroke and living in high-income economy countries. Study methods, theory, and data were analyzed using descriptive and interpretive analyses. RESULTS: Thirty-seven studies met our inclusion criteria, including 29 journal articles and 8 dissertations. Multiple authors reported recruitment as a key challenge in study conduct. Multiple existing theories and frameworks of health behaviours, beliefs, self-efficacy, race, and family structure informed research positionality, questions, and analysis across studies. Participant experiences were categorized as (1) engagement in stroke prevention activities and responses to stroke symptoms, (2) self-management and self-identity after stroke, and (3) stroke care experiences. CONCLUSIONS: This study synthesizes the experiences and needs of individuals of African descent impacted by stroke. Findings can help tailor stroke interventions across the stroke care continuum, as they suggest the need for intersectional and culturally humble care approaches.

Exploring the Poststroke Experiences and Needs of South Asian Communities Living in High-Income Countries: Findings from a Scoping Review.

Despite the high prevalence of stroke among South Asian communities in high-income countries, a comprehensive understanding of their unique experiences and needs after stroke is lacking. This study aimed to synthesize the literature examining the experiences and needs of South Asian community members impacted by stroke and their family caregivers residing in high-income countries. A scoping review methodology was utilized. Data for this review were identified from seven databases and hand-searching reference lists of included studies. Study characteristics, purpose, methods, participant characteristics, results, limitations, recommendations, and conclusions were extracted. Data were analyzed using descriptive qualitative analysis. In addition, a consultative focus group exercise with six South Asian community members who had experienced a stroke and a program facilitator was conducted to inform the review interpretations. A total of 26 articles met the inclusion criteria and were analyzed. Qualitative analysis identified four descriptive categories: (1) rationale for studying the South Asian stroke population (e.g., increasing South Asian population and stroke prevalence), (2) stroke-related experiences (e.g., managing community support versus stigma and caregiving expectations), (3) stroke service challenges (e.g., language barriers), and (4) stroke service recommendations to address stroke service needs (e.g., continuity of care). Several cultural factors impacted participant experiences, including cultural beliefs about illness and caregiving. Focus group participants from our consultation activity agreed with our review findings. The clinical and research recommendations identified in this review support the need for culturally appropriate services for South Asian communities across the stroke care continuum; however, more research is necessary to inform the design and structure of culturally appropriate stroke service delivery models.

An educational intervention to promote a culture of gender equity among persons with traumatic brain injury and caregivers: A pilot study.

Background: Traumatic brain injury (TBI) outcomes are dependent on patients' biological sex (e.g., hormone levels) and sociocultural gender (e.g., norms, responsibilities). Informal caregivers additionally experience disruptions to identity and roles post-TBI. However, information on this topic remains largely unavailable to patients and caregivers. Purpose: This study aimed to determine the effectiveness of a one-time educational intervention on sex and gender influences in TBI for patients and informal caregivers. Materials and methods: We conducted a pilot pre-test/post-test randomized control-group design study. Groups (i.e., passive, active and control) consisted a total of 16 persons with TBI and caregivers (75% persons with TBI, 63% women). Individual and group learning gains, and group-average normalized gain, were computed for three learning domains: knowledge, attitude, and skill. An intervention with an average normalized gain of ≥30% was considered effective. Educational intervention evaluation and qualitative comments post-participation were summarized. Results: The passive group demonstrated the highest average normalized gain across the three learning domains, including 100% for knowledge, 40% and 61% for attitude, and 37% for skill. The remaining groups did not reach an average normalized gain of ≥30%, except for the attitude domain of the control group (33% and 32%). Two key categories were identified qualitatively: (1) gendered self-expectations post-injury and (2) implications of gender stereotypes in rehabilitation, including the need for rehabilitation treatment to look beyond sex and gender. The post-participation educational session evaluation conveyed high appraisal of content, organization, and usability of the intervention. Conclusion: A one-time passive educational intervention on sex and gender in TBI may improve knowledge, attitude, and skill on the topic of sex and gender among adults with TBI and caregivers. Obtaining knowledge and skill on sex and gender effects in TBI can potentially help persons with TBI and caregivers adapt to changes in roles and behaviours post-injury.

Sex differences and predictors of completion of a 6-month exercise-based cardiac rehabilitation program in 1,536 people following stroke.

OBJECTIVE: To retrospectively examine sex-differences and predictors of completion in consecutively-referred patients to a 6-month exercise-based cardiac rehabilitation program (CRP) from 2006 to 2017. MATERIALS/METHODS: People with hemiplegic gait participated in stroke-adapted-CRP; otherwise, traditional-CRP. Reasons for non-completion were ascertained by interview. Regression-analyses were conducted to determine non-completion in all patients and women and men separately. RESULTS: There were 1536 patients (30.3% women), mean age 64.5 ± 12.5 with 23% initiating the stroke-adapted-CRP. Overall, 75.1% completed the CRP (87.3% stroke-adapted-CRP vs 71.5% traditional-CRP; p < .001). There was no difference in completion between women and men (74.5% vs 75.4%; p=0.7), or in attendance to pre-scheduled sessions (p=0.6) or reasons for non-completion (p > .05, all). The only sex difference in completion by age (decade) occurred in those <41 years (59% women vs 85% men; p=.02). Baseline predictors of non-completion among all patients included not being enrolled in the stroke-adapted-CRP, lower V̇O2peak, smoking, diabetes (prescribed insulin) and depression but not sex (p=.5) or age (p=.15). Unique predictors in women vs men were younger age, lower V̇O2peak, smoking, diabetes (prescribed insulin), depression, and cancer diagnoses. Unique to men was having >1 stroke and diabetes (any anti-diabetes medication). The strongest predictor of non-completion among all models was not being enrolled in stroke-adapted-CRP. CONCLUSIONS: While there were no sex-differences in adherence to the CRP, women and men have mostly unique predictors of non-completion. Younger women are at greatest risk for non-completion. Practitioners should provide sex-specific, tailored strategies for enhancing completion with a focus on younger women and offering a stroke-adapted-CRP with close attention to those with diabetes.

Optimizing early education provided at the Hull-Ellis Concussion and Research Clinic: A multiple methods evaluation from the Toronto Concussion Study.

OBJECTIVES: The purpose of this study was to determine factors and characteristics associated with changes in knowledge among adults receiving education within the first 8 weeks post-concussion. The study also aimed to understand desired preferences (i.e. content, format) for education post-concussion from the perspective of patients and physicians. METHODS: Patient-participants (17-85 years) were prospectively recruited within one week of a concussion. Participants received education over visits from Weeks 1 to 8 post-injury. Primary outcome measures were participant responses on a concussion knowledge questionnaire at Weeks 1 (n = 334) and 8 (n = 195), and feedback regarding education through interviews. Other variables collected included preexisting medical history, physician assessed recovery and symptoms. RESULTS: There was a significant increase in average knowledge on the concussion knowledge questionnaire across time (71% vs 75% correct; p = 0.004). Participants with higher levels of education, female sex and preexisting diagnoses of depression or anxiety had more correct responses at Week 1. Healthcare providers had varying comfort levels addressing mood-related symptoms. CONCLUSIONS: There is a need to tailor education provided to concussion patients based on preinjury characteristics, i.e., mood disorders and demographic factors. Healthcare providers may need additional training in addressing mood symptoms and should modify the approach to fit patients' unique needs.

Clinicians' Experiences of Implementing a Telerehabilitation Toolkit During the COVID-19 Pandemic: Qualitative Descriptive Study.

BACKGROUND: Although the COVID-19 pandemic resulted in a rapid implementation and scale-up of telehealth for patients in need of rehabilitation, an overall slower scaling up to telerehabilitation has been documented. OBJECTIVE: The purpose of this study was to understand experiences of implementing telerehabilitation during the COVID-19 pandemic as well as using the Toronto Rehab Telerehab Toolkit from the perspective of rehabilitation professionals across Canada and internationally. METHODS: The study adopted a qualitative descriptive approach that consisted of telephone- or videoconference-supported interviews and focus groups. Participants included rehabilitation providers as well as health care leaders who had used the Toronto Rehab Telerehab Toolkit. Each participant took part in a semi-structured interview or focus group, lasting approximately 30-40 minutes. Thematic analysis was used to understand the barriers and enablers of providing telerehabilitation and implementing the Toronto Rehab Telerehab Toolkit. Three members of the research team independently analyzed a set of the same transcripts and met after each set to discuss their analysis. RESULTS: A total of 22 participants participated, and 7 interviews and 4 focus groups were included. The data of participants were collected from both Canadian (Alberta, New Brunswick, and Ontario) and international sites (Australia, Greece, and South Korea). A total of 11 sites were represented, 5 of which focused on neurological rehabilitation. Participants included health care providers (ie, physicians, occupational therapists, physical therapists, speech language pathologists, and social workers), managers and system leaders, as well as research and education professionals. Overall, 4 themes were identified including (1) implementation considerations for telerehabilitation, encompassing 2 subthemes of "infrastructure, equipment, and space" and "leadership and organizational support"; (2) innovations developed as a result of telerehabilitation; (3) the toolkit as a catalyst for implementing telerehabilitation; and (4) recommendations for improving the toolkit. CONCLUSIONS: Findings from this qualitative study confirm some of the previously identified experiences with implementing telerehabilitation, but from the perspective of Canadian and international rehabilitation providers and leaders. These findings include the importance of adequate infrastructure, equipment, and space; the key role of organizational or leadership support in adopting telerehabilitation; and availing resources to implement it. Importantly, participants in our study described the toolkit as an important resource to broker networking opportunities and highlighted the need to pivot to telerehabilitation, especially early in the pandemic. Findings from this study will be used to improve the next iteration of the toolkit (Toolkit 2.0) to promote safe, accessible, and effective telerehabilitation to those patients in need in the future.

"I Have Eight Different Files at Eight Different Places": Perspectives of Youths and Their Family Caregivers on Transitioning from Pediatric to Adult Rehabilitation and Community Services.

INTRODUCTION: The number of young adults (youth) living with childhood-onset disabilities, and requiring transitional support to adult community and rehabilitation services, is increasing. We explored facilitators and barriers to accessing and sustaining community and rehabilitation services during the transition from pediatric to adult care. METHODS: A qualitative descriptive study was conducted in Ontario, Canada. Data were collected through interviews with youth (n = 11) and family caregivers (n = 7). The data were coded and analyzed using thematic analysis. RESULTS: Youth and caregivers face many types of transitions from pediatric to adult community and rehabilitation services, e.g., those related to education, living arrangements, and employment. This transition is marked by feelings of isolation. Supportive social networks, continuity of care (i.e., same care providers), and advocacy all contribute to positive experiences. Lack of knowledge about resources, changing parental involvement without preparation, and a lack of system responses to evolving needs were barriers to positive transitions. Financial circumstances were described as either a barrier or facilitator to service access. CONCLUSIONS: This study demonstrated that continuity of care, support from providers, and social networks all contribute markedly to the positive experience of transitioning from pediatric to adult services for individuals with childhood-onset disabilities and family caregivers. Future transitional interventions should incorporate these considerations.