Retention of Young Adults with Sickle Cell Disease in Outpatient Adult Care

Introduction

As the life expectancy of people with sickle cell disease (SCD) increases (Payne 2020), focus has been on preparing the transition from pediatric to adult care, with success measured as attendance at the first adult appointment. The handoff to adult care typically marks the end of transition support. However, people with SCD aged 25-35 have the highest rates of healthcare utilization (Benenson 2017). Little is known about how to retain young adults in adult care in the years following transition. Our objective is to examine current literature for strategies used by adult clinics to support young adults with SCD to remain engaged in specialist care after the first adult appointment.

Methods

Following guidelines established by Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (Tricco 2018), we reviewed the literature for interventions aimed at retaining young adults (age 18-24) with SCD in outpatient care after their first adult appointment following transition from pediatric care. We queried multiple online databases (PubMed, CINAHL, Web of Science) for articles published between January 2010 to April 2024. Articles did not need to include success of intervention. The initial search with focus on SCD returned limited findings, prompting us to broaden the review and include care continuity of young adults with any chronic illness.

Results

The scoping review identified several studies which employ an intervention to retain young adults with chronic illnesses in adult specialist care. Some studies show success with co-located adult and pediatric care for retention of patients with SCD and human immunodeficiency virus. Other institutions employed a transition navigator who provides pre-transition support and limited post-transition follow-up. A study including young adults with any chronic physical illness used a mobile app to foster engagement with adult healthcare services.

Conclusions

The number of studies documenting interventions for retaining young adults with SCD in outpatient care following the initial adult visit is severely limited. While it is possible that more interventions exist that are not published, it is not unreasonable to consider applying interventions from other chronic illnesses to SCD. However, the approach with the most success, that of the co-location model, may not be feasible for most institutions. Technology-based interventions, such as mobile applications, would likely be more widely implementable. More interventions to ensure young adults engage with adult outpatient specialty care are much needed. Continuity of care in young adults with any chronic illness is important, and it is especially necessary in the SCD population. Adults with SCD require long-term specialist care to minimize the devastating complications that characterize the natural course of their disease and elevate quality of life.

Kutlar:Novartis: Consultancy, Research Funding; Novo-Nordisk: Consultancy, Research Funding; Vertex: Consultancy, Other: Evebt adjudication committee; blue bird bio: Consultancy, Other: DMC; Akira Bio: Consultancy, Research Funding; NIH/NHLBI: Other: Sickle cell disease Implementation Consortium; REACH and PUSH-UP Studies: Other: DSMB MEMBER (NHLBI); Global Blood Therapeutics/ Pfizer: Other: EAC Member.