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

Abstract

Background: Sickle cell disease (SCD), an inherited red blood cell disorder, primarily affects African Americans in the United States. Adolescents and young adults with SCD (AYA-SCD) are at risk of high morbidity and mortality when transitioning from pediatric to adult care. The goal of this qualitative study was to understand factors associated with optimal implementation of the AYA-SCD transition. Methods: Participants were recruited from a large hospital system and the community. Interview guides included topics on access to primary and specialized care, beliefs and practices related to pain control, transition from pediatric to adult care, and patient experiences in the emergency department. Data were coded and analyzed using an inductive thematic coding approach in combination with a deductive coding approach using domains from the Consolidated Framework for Implementation Research (CFIR). Results: Fifty-nine participants, including 21 AYA-SCD from both the pediatric and adult clinics, 17 caregivers, 9 pediatric SCD providers, 6 adult SCD providers, and 6 emergency department providers, completed 11 focus groups and 5 semistructured interviews. Results identified multiple factors within the domains of CFIR including the outer setting, inner setting, individual characteristics, and intervention characteristics. Results were incorporated into a transition framework to inform local practice improvement. Conclusion: Our study highlights the importance of multilevel barriers and facilitators for AYA-SCD transition from pediatric to adult care. Future studies could use implementation science frameworks to understand local context and identify strategies and intervention characteristics to improve transition programming. These efforts will ultimately reduce health disparities and ensure health equity.

Perspectives of Adolescents and Young Adults With Sickle Cell Disease and Clinicians on Improving Transition Readiness With a Video Game Intervention

“…Building on this prior work, we identified environmental, clinician, and patient-level barriers and facilitators to achieving self-efficacy and patient engagement. However, there is a paucity of interventions to target these skills for AYA-SCD 10–12 …”

“…However, there is a paucity of interventions to target these skills for AYA-SCD. [10][11][12] Video games are ubiquitous among teenagers, as > 90% of AYA play video games. 13 Through repetitive, interactive, experiential learning, video games can facilitate knowledge, skill acquisition, and ultimately behavior change through active engagement and feedback.…”

“…However, there is limited data on core determinants of the successful engagement of AYA-SCD in decision-making. In addition, despite the evidence that the transition period is a high-risk time for AYA-SCD, there is a paucity of interventions that target skills necessary to optimize the transition for AYA-SCD 10–12 …”

“…In addition, despite the evidence that the transition period is a high-risk time for AYA-SCD, there is a paucity of interventions that target skills necessary to optimize the transition for AYA-SCD. [10][11][12] The development and use of video games designed to educate, train, or change behavior as they entertain players have substantially grown over the past decade. Several systematic reviews have demonstrated the positive effects of video games on improving a variety of health outcomes in youth, from self-management and outcomes for diabetes, asthma, and mental health conditions to improvement in physical activity, nutrition, and medication adherence.…”

Evaluating the implementation of a multi-level mHealth study to improve hydroxyurea utilization in sickle cell disease

“…For instance, formally appointing key stakeholders to ensure the fidelity of the intervention or gaining visible support from the system and local leaders are contextual factors that are not necessarily known as pre-conditions for optimal implementation (53, 54). While CFIR has been used to evaluate the implementation of the transition to adult care activities in SCD (55), rare examples of the combination of different models and frameworks in SCD exist (56), and none focused on medication utilization. Whereas RE-AIM provides a practical framework for planning and evaluating mHealth interventions, other models such as TAM and CFIR could explain why implementation might succeed or fail if used proactively and help to identify relevant modifiable factors affecting adoption, implementation, and maintenance.…”