Transition to adult care for adolescents with sickle cell disease: Results of a national survey

Abstract

The objective was to present the 'voice' of adolescents with sickle cell disease (SCD) as part of the discussion of transition issues by identifying and documenting their expressed concerns and expectations, as well as what program priorities they perceive would facilitate a smooth transition to adult care. Cross-sectional data were collected by means of structured questionnaire interviews, using standard instruments. A volunteer sample of 172 adolescents with SCD aged 14 years and older still in pediatric care within community-based and medical center SCD programs across the United States was recruited. Statistically significant results indicated the top concerns of adolescents were: lack of information relating to their transition to adult care; fear of leaving the healthcare provider with whom they were already familiar; fear that adult care providers might not understand their needs; belief that an SCD transition program was needed and that it should focus on provider support; information provision about adult care programs; ways to meet adult care providers; and ways to help healthcare providers understand their needs. We conclude that many adolescents with SCD have concerns and fears about their transition to adult care. Based on findings from this study, it is recommended that transition programs address structural and interpersonal issues of adolescents and providers if they are to be successful. Strategies by which this can be achieved are recommended, including the need to encourage, support and provide assistance for peer education, outreach programs and peer-led instructions, since these hold great promise as approaches that are adolescentcentered and adolescent-delivered.

Transitioning From Pediatric to Adult Care

“…Telfair et al (46) assessed provider perceptions regarding transition services, and although most agreed that transition programs were necessary, few did anything to facilitate the transition process. Those who care for both adolescents and adults expected to see the patient with their parent, whereas those who cared only for adults expected to see the adolescent alone.…”

Health Literacy in Adolescents With Sickle Cell Disease

“…This transfer of care from pediatric services to adult services in patients with chronic illness is associated with increased morbidity and mortality for these patients (Brousseau, Owens, Mosso, Panepinto, & Steiner, 2010;Cadario et al, 2009;Debaun & Telfair, 2012). This has been attributed to a multitude of factors including patients' lack of knowledge regarding the transition process, fears that adult providers will not understand their needs, changes in insurance providers, and (Quinn, Rogers, McCavit, & Buchanan, 2010) inability to get appointments due to insurance status (Telfair, Ehiri, Loosier, & Baskin, 2004).…”

Transition to Adult Care: A Statewide Survey among Pediatric Hemoglobinopathy Specialty Centers in New York

“…The primary concern of young adults regarded their ability to pay and acceptance by adult care providers [18]. Studies have identified a lack of information on transition, fear of departing from their familiar healthcare provider [13] and embarking on a relationship with a new provider [17] as major concerns on transition to adult care. Once young patients were moved to adult care successfully, they acknowledged benefits of the adultoriented system even though most young patients were concerned about adaptation prior to transition [17].…”

“…Other studies have assessed the challenges faced when youth with special health care needs seek transition to adult-oriented care [8][9][10][11][12][13]. A recent survey was conducted among 45 large (≥100 pediatric patients) sickle cell centers in the US that care for pediatric patients to describe current transition practices and identify areas for improvement [14].…”