ABSTRACT
BACKGROUND: Despite the potential for community-based exercise programs supported through healthcare-community partnerships (CBEP-HCPs) to improve function post-stroke, insufficient trial evidence limits widespread program implementation and funding. We evaluated the feasibility and acceptability of a CBEP-HCP compared to a waitlist control group to improve everyday function among people post-stroke. METHODS: We conducted a 3-site, pilot randomized trial with blinded follow-up evaluations at 3, 6, and 10 months. Community-dwelling adults able to walk 10 m were stratified by site and gait speed and randomized (1:1) to a CBEP-HCP or waitlist control group. The CBEP-HCP involved a 1-h, group exercise class, with repetitive and progressive practice of functional balance and mobility tasks, twice a week for 12 weeks. We offered the exercise program to the waitlist group at 10 months. We interviewed 13 participants and 9 caregivers post-intervention and triangulated quantitative and qualitative results. Study outcomes included feasibility of recruitment, interventions, retention, and data collection, and potential effect on everyday function. RESULTS: Thirty-three people with stroke were randomized to the intervention (n = 16) or waitlist group (n = 17). We recruited 1-2 participants/month at each site. Participants preferred being recruited by a familiar healthcare professional. Participants described a 10- or 12-month wait in the control group as too long. The exercise program was implemented per protocol across sites. Five participants (31%) in the intervention group attended fewer than 50% of classes for health reasons. In the intervention and waitlist group, retention was 88% and 82%, respectively, and attendance at 10-month evaluations was 63% and 71%, respectively. Participants described inclement weather, availability of transportation, and long commutes as barriers to attending exercise classes and evaluations. Among participants in the CBEP-HCP who attended ≥ 50% of classes, quantitative and qualitative results suggested an immediate effect of the intervention on balance, balance self-efficacy, lower limb strength, everyday function, and overall health. CONCLUSION: The CBEP-HCP appears feasible and potentially beneficial. Findings will inform protocol revisions to optimize recruitment, and program and evaluation attendance in a future trial. TRIAL REGISTRATION: ClinicalTrials.gov , NCT03122626 . Registered April 21, 2017 - retrospectively registered.
ABSTRACT
Transitional care interventions have the potential to optimize continuity of care, improve health outcomes and enhance quality of life for adolescents and young adults living with chronic childhood-onset disabilities, including neurodevelopmental disorders, as they transition to adult health and social care services. The paucity of research in this area poses challenges in identifying and implementing interventions for research, evaluation and implementation. The purpose of this project was to advance this research agenda by identifying the transitional care interventions from the scientific literature and prioritize interventions for study. A modified-Delphi approach involving two rounds of online surveys followed by a face-to-face consensus meeting with knowledge users, researchers and clinician experts in transitional care (n = 19) was used. A subsequent virtual meeting concluded the formulation of next steps. Experts rated 16 categories of interventions, derived from a systematic review, on importance, impact, and feasibility. Seven of the 16 interventions categories received a mean score rating of ≥7 (out of 10) on all three rating categories. Participants then rank ordered the reduced list of seven interventions in order of priority and the top four ranked interventions advanced for further discussion at a consensus meeting. Using the Template for Intervention Description and Replication (TIDieR) checklist as a guide, the participants identified that a study of a peer system navigator was worthy of future evaluation. This study highlighted that transitional care interventions are complex and multifaceted. However, the presence of a peer to support system navigation, advocacy and individual and family education was considered the most ideal intervention addressing the current gap in care. Future research, which aims to engage patients and families in a co-design approach, is recommended to further develop this intervention.
ABSTRACT
CONTEXT: Transition from the pediatric to the adult health care system is a complex process that should include medical, psychosocial, educational, recreational, and vocational considerations. OBJECTIVE: In this systematic review, we aim to synthesize the evidence on transitional care interventions (TCIs) to improve the quality of life (QoL) for adolescents and young adults with childhood-onset disabilities, including neurodevelopmental disorders. DATA SOURCES: Four electronic databases (Medline, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature) were searched. STUDY SELECTION: In the included studies, researchers examined TCIs for adolescents and young adults (12-24 years of age) with childhood-onset disabilities. Studies were experimental, quasi-experimental, and observational studies published in the last 26 years. DATA EXTRACTION: Two reviewers independently completed study screening, data extraction, and risk-of-bias assessment. RESULTS: Fifty-two studies were included. Five studies reported on QoL, but statistically significant improvements were noted in only 1 of these studies. Significant improvements were also found in secondary outcomes including disability-related knowledge and transitional readiness. TCIs targeted patients, families and/or caregivers, and health care providers and exhibited great heterogeneity in their characteristics and components. LIMITATIONS: Inconsistent reporting on interventions between studies hindered synthesis of the relationships between specific intervention characteristics and outcomes. CONCLUSIONS: Although there is limited evidence on the impact of TCIs on the QoL for youth with childhood-onset disabilities, there is indication that they can be effective in improving patient and provider outcomes. The initiation of transition-focused care at an early age may contribute to improved long-term health outcomes in this population.
