Using Implementation Science to Improve Transition for Adolescents and
Young Adults with Sickle Cell Disease
Abstract
Background The adolescent and young adult (AYA) period is a time of high
morbidity and mortality for persons with sickle cell disease (SCD). The
goal of this study was to use implementation science combined with
qualitative methods to understand the determinants of an optimal
transition to adult care for AYA with SCD. Methods Sixty participants
were purposefully recruited from a large hospital system and the
community for 16 focus groups or semi-structured interviews.
Patient-caregiver dyads and health care providers shared experiences in
the health care and academic settings. Data were coded and analyzed by
paired coders using an inductive coding approach in combination with an
implementation research framework, the Consolidated Framework for
Implementation Research (CFIR). Results At the Individual
Characteristics level, AYA patients expressed challenges with adult life
experiences, disease self-management, and preparation for the adult
health care model. Caregivers and health care providers reported
independence and autonomy as facilitators of a successful transition. At
the Inner and Outer Setting levels, differences between pediatric and
adult health care models were noted barriers, highlighting the gap in
patient-centered care. Patient and provider communication was identified
as both a barrier and facilitator. A standardized approach to transition
planning and coordination was noted as a facilitator. At the
Intervention Characteristics level, adaptability, incentive, and
perceived attractiveness of the intervention were important components.
Conclusion This study highlights which determinants of transition are
most amenable to evidence-based interventions. This is imperative for
rapidly improving this process for AYA with SCD and, thus, improving
overall outcomes.