BACKGROUND AND OBJECTIVE: Transition from pediatric to adult care is associated with adverse health outcomes for many adolescents with chronic illness. We identified quality indicators for transition to adult care that are broadly applicable across chronic illnesses and health systems. METHODS: Medline, Embase, and the Cumulative Index to Nursing and Allied Health Literature were searched, covering earliest available date to July 2021. The Gray Matters framework was used to search gray literature. Two independent reviewers screened articles by title and abstract, followed by full-text review. Disagreements were resolved by a third reviewer. Studies were included that identified quality indicators developed via consensus-building methods. Indicators were organized into a framework categorized by illness specificity, level of care, Donabedian model, and Institute of Medicine quality domain. Appraisal of Guidelines for Research and Evaluation tool was used for critical appraisal. RESULTS: The search identified 4581 articles, of which 321 underwent full-text review. Eight peer-reviewed studies and 1 clinical guideline were included, identifying 169 quality indicators for transition. Of these, 56% were illness specific, 43% were at the patient level of care, 44% related to transition processes, and 51% were patient centered and 0% equity focused. Common indicator themes included education (12%), continuity of care (8%), satisfaction (8%), and self-management/self-efficacy (7%). The study was limited by quality indicators developed through consensus-building methodology. CONCLUSIONS: Although most quality indicators for transition were patient-centered outcomes, few were informed by youth and parents/caregivers, and none focused on equity. Further work is needed to prioritize quality indicators across chronic illness populations while engaging youth and parents/caregivers in the process.
Objectives Transition of care can be a complex process that involves multiple providers working together across the pediatric and adult health care system to support youth. The shift from a primarily family-centred approach to a patient-centred approach that emphasizes more personal responsibility for health care management can be challenging for youth, caregivers and providers to navigate. Despite the importance of transition, there is a lack of evidence about the best practices and types of interventions that support the transition of care process from the perspective of both pediatric and adult health care providers. An exploration of barriers and facilitators is a critical first step to identifying important behavioural determinants for designing and implementing evidence-based interventions. As such, the purpose of this study was to identify the barriers and facilitators to the transition of care from the perspective of pediatric and adult health care providers. Methods A qualitative descriptive design was used to conduct semi-structured interviews guided by the COM-B Model of Behaviour – a theoretical model that suggests that for any behaviour to occur there must be a change in one or more of the following domains: capability, opportunity and/or motivation. The study took place in the province of Nova Scotia, Canada and focused on three common conditions: Inflammatory Bowel Disease, Diabetes, and Juvenile Idiopathic Arthritis. Participants were recruited through stratified purposeful and convenience sampling and all interviews were conducted virtually on Zoom. Interviews were audio-recorded, transcribed verbatim and imported into NVivo Qualitative Data Software for analysis. Data were first analyzed using directed content analysis, guided by the COM-B model, then further examined using inductive thematic analysis to identify barriers and facilitators within the three domains. Results In total, 26 health care providers participated in this study (pediatric, n=13, adult n=13) including a mix of adult and pediatric physicians, nurses, and allied health care professionals. The participants identified primarily as female (n=19.73%) and had a range of years of experience (3–39, mean = 14.84). We identified a range of interconnected barriers and facilitators across each of the COM-B Model of Behaviour domains such as, degree of formalized training (capability), facilitation and coordination responsibilities (opportunity), collaboration across providers (opportunities), securing attachment to adult care system (motivation) and time (opportunity). Findings were categorized by three overarching themes: (1) Knowledge and Skills to Support Transition of Care; (2) Navigation Role for Youth and Caregivers; and (3) System Coordination. Conclusions By using the COM-B Model of Behaviour, we identified key barriers and facilitators that intersect to influence the transition of care process. These findings will be used to inform and adapt initiatives and interventions in Nova Scotia to improve the transition experience, as well as may be transferrable to other jurisdictions.
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