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 adolescent-centered and adolescent-delivered.