A scoping review of transition interventions for young adults with sickle cell disease

Abstract

Standardized programming for individuals with sickle cell disease (SCD) transitioning from pediatric to adult-centered care does not currently exist, resulting in high rates of mortality and morbidity. This scoping review examines and evaluates the current literature on SCD transition programs and interventions. Eligible studies described an existing program for individuals with SCD aged 12-29 years preparing to transition.The Evidence Project risk-of-bias tool was used to assess article quality. We identified 30 eligible articles, of which, only two were randomized controlled trials. Many studies have incomplete reports of feasibility information, such as completion rates, patient characteristics, and attrition; all studies were limited to a single institution; and most studies were rated high for risk of bias. Progress has been made in designing and gathering initial evaluation data for SCD transition programs; however, there is a need for higher quality studies, consistent assessment, and better dissemination of programs.

Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multilevel Perspective on Barriers, Facilitators, and Future Directions

“…Previous efforts in improving transition programs have been focusing on patient education to build patient transition preparedness 28,29. A scoping review of transition interventions for young adults with SCD identified over 20 published articles, the majority of which focus on improving patients’ skills and disease knowledge 30. Without acknowledging or addressing the outer and inner setting environment, these programs may not achieve maximum outcomes as desired.…”

Self‐management interventions for children and young people with sickle cell disease: A systematic review

“…23 and OpenGrey from their inception to November 2021 supplemented database searches. Third, reference lists of included studies and systematic review [18][19][20][21] also provided sources for studies not identified in the database searches. The 3-step search strategy was implemented by one reviewer (B.…”

“…Previous reviews have focused on specific psychological, 18 medication adherence, 19 transition programmes 20 and e‐health interventions, 21 and assessed their effects on particular outcomes. No systematic review has been identified that focused on all types of self‐management interventions for CYP with SCD and included the full range of health and social outcomes that have been evaluated.…”

Transition Preparation and Satisfaction of Care Among Adolescents and Young Adults With Sickle Cell Disease at the Ghana Institute of Clinical Genetics

“…Transition of care has generally been defined as a “purposeful, planned process involved in the movement of older children from a focus on pediatric life skills to adult life skills.”14 Research on the core components of and metrics to measure successful transition in SCD is ongoing 15,16. A multinational taskforce of SCD experts recommended specific priorities for SCD-specific transition: skills transfer, increasing self-efficacy, coordination, knowledge transfer, linking to adult services, and evaluating readiness 17.…”

“…14 Research on the core components of and metrics to measure successful transition in SCD is ongoing. 15,16 A multinational taskforce of SCD experts recommended specific priorities for SCD-specific transition: skills transfer, increasing self-efficacy, coordination, knowledge transfer, linking to adult services, and evaluating readiness. 17 These tasks require skills that may be affected by social, educational, neurocognitive, and structure of care challenges for individuals with SCD.…”