Transition to adulthood and adult health care for patients with sickle cell disease or cystic fibrosis: Current practices and research priorities

Abstract

IntroductionA growing population of adults living with severe, chronic childhood-onset health conditions has created a need for specialized health care delivered by providers who have expertise both in adult medicine and in those conditions. Optimal care of these patients requires systematic approaches to healthcare transition (HCT). Guidelines for HCT exist, but gaps in care occur, and there are limited data on outcomes of HCT processes.MethodsThe Single Disease Workgroup of the Lifespan Domain Task Force of the National Center for Advancing Translational Sciences Clinical and Translational Science Award programs convened a group to review the current state of HCT and to identify gaps in research and practice. Using cystic fibrosis and sickle cell disease as models, key themes were developed. A literature search identified general and disease-specific articles. We summarized key findings.ResultsWe identified literature characterizing patient, parent and healthcare provider perspectives, recommendations for transition care, and barriers to effective transition.ConclusionsWith increased survival of patients with severe childhood onset diseases, ongoing study of effective transition practices is essential as survival increases for severe childhood onset diseases. We propose pragmatic methods to enhance transition research to improve health and key outcomes.

Health Care Disparities Among Adolescents and Adults With Sickle Cell Disease: A Community-Based Needs Assessment to Inform Intervention Strategies

“…46,47 Furthermore, adult care providers were less willing to accept adults with SCD because of the complexity of their management, for which the providers did not have the necessary expertise. 3,[48][49][50] In addition, both adolescents and adults with SCD and primary care providers highlighted the inadequacies of the current system in addressing the chronic pain needs of this population. Linking back to the Solberg conceptual framework, our needs assessment results confirm the important role of establishing SCD care as a priority within a health care system-this requires leadership and vision.…”

Using Implementation Science to Improve Transition for Adolescents and Young Adults with Sickle Cell Disease

“…At the Individual Characteristics level, previous literature has highlighted the importance of patient transition readiness, 23,24 and our data suggest that caregivers also need to be prepared for patient transition, especially when addressing adult-specific challenges, and that promoting patient and provider advocacy is an important component for successful transition.…”

Transition care continuity promotes long‐term retention in adult care among young adults with sickle cell disease

“…Continuity of care in SCD has been previously shown to decrease acute health care utilization and acute complications such as stroke and acute chest syndrome, because the patients are able to maintain treatment therapies such as hydroxyurea or transfusions 10,14–16 . Not only does retention in adult care allow for opportunities to receive regular care, but it also allows access to newly developed treatments, including curative therapies for SCD, if care is received at specialized centers.…”