Description of an Adolescent and Young Adult Sickle Cell Transition Program: Using Clinical Practices to Inform Clinic Development
Authors: Smith Sarah , O'Brien Jessica , Mclain Barbara , Braniecki Suzanne , Schaefer Edo , Pereira Lila 
Published: December 2024

Background

The period of transition into adulthood represents a critical turning point for adolescent and young adults (AYA) living with sickle cell disease (SCD). Their ability to participate in society and live fulfilling adult lives depends significantly on how this transition is manged (Treadwell et al., Am J Hematol, 2011). Recent medical advancements have facilitated the transition into adulthood for over 85% of children with chronic conditions, necessitating a shift to adult medical services (Wright et al., Curr Opin Pediatr, 2018) Despite this progress, many barriers persist in providing optimal care in the AYA SCD population.We present this methods poster for an AYA SCD transition program currently being implemented within a pediatric medical center as a standard of care.

Objectives

Our free-standing pediatric academic center, connected to a large adult hospital, serves approximately 300 sickle cell patients, 33% of whom are AYA (ages 12-30). Through a grant funded by the NYS department of health, we plan to hire a nurse navigator to support a successful transition for our AYA sickle cell disease patients and closely monitor the impact of social determinants of health on these outcomes. As part of implementing this transition program, we aim to characterize the outcomes of AYA sickle cell patients treated in our hospital system's AYA Sickle Cell Transition Clinic and identify clinic-specific and patient-specific indicators of both positive and negative outcomes for these patients through their transition period.

Study Design/Methods

We aim to enroll ~75 AYA SCD patients over five years, focusing on those transitioning to adult care within our hospital's SCD clinic. Quarterly monitoring through a transition readiness clinic will provide personalized care with services including medication adherence, medical referrals, and mental health screening. Annual focus groups will address care barriers and outcomes. Our study team will maintain a database to track patient activities and clinical services and monitor progress using the Got Transition Health Care Transition Timeline for Youth and Young Adults (Got Transtion, 2024) to collect variables such as zip code, insurance type, and disease management efficacy markers.

Data Analysis

For our methods poster, we will present models of our plan for analysis for a longitudinal, mixed methods study. We plan to conduct regular prospective chart reviews and integrate qualitative data. Preliminary analysis will include descriptive statistics and patient demographics. Qualitative data will be analyzed using inductive content analysis and the constant comparison method, with an evolving code book based on patient focus groups. We plan to analyze long-term health events and compare them with historical data via t-tests. We plan to use regression or chi-square analyses to assess the impact of AYA-specific programming and patient indicators on outcomes. Cross-sectional analysis will be used to explore relationships between medical/psychosocial events and patient demographics. Significant bivariate associations will lead to multivariate analysis adjusting for potential confounders.

Conclusions

Advancements in medical care have increased survival rates for children with SCD, creating new challenges and opportunities for AYA treatment (Lanzkron et al., Public Health Rep. 2013). We have proposed one method to integrate a SCD transition program into the daily operations of a SCD clinic. The implications of such a study are wide-ranging, potentially reducing burden on the medical system by decreasing emergency department visits, hospital admissions, and rehospitilizations rates. Implementing this AYA SCD transition program aims to deepen our understanding of social determinants of health and their impact on a successful trnaisoin , identify barriers and facilitators to care, and contribute to the literature on transition care.