Adolescents with Sickle Cell Disease in a Rural Community: Are They Ready to Transition to Adulthood?

OBJECTIVES: Most patients with sickle cell disease (SCD) survive to adulthood; however, young adults with SCD have high rates of morbidity and mortality and may struggle in the transition to a healthy adulthood. The purpose of this study was to determine the readiness of a rural SCD population for the transition to adulthood and adult medical care. METHODS: Adolescents and young adults who were current/former patients of a rural pediatric practice were surveyed. Assessments included difficulty dealing with daily care issues and perceived/encountered barriers to transition. Adolescents were asked if a doctor had discussed transition to adult care. Young adults also were asked about satisfaction with their transition experience and about the utility and composition of a transition program. RESULTS: Surveys were completed by 13 adolescents and 5 young adults. Adolescents reported difficulty leaving their pediatrician (62%) and knowing how SCD differs from other types of anemia (54%). They had concerns about finding an adult doctor (54%), arranging transportation (54%), preparing to use an adult hospital (46%), and handling financial issues (46%). Two-thirds had not discussed or did not know whether their doctor had discussed transitions. Young adults described difficulty leaving their pediatrician (100%), finding an adult doctor (80%), keeping a job (60%), knowing what to expect (40%), and knowing how to pay for medical care (40%). Two-thirds were not satisfied with their transition and all believed a transition program would be helpful. Services suggested for a transition program to provide included information about adult providers/adult healthcare services, ways to take control of one's own care, and helping adult providers understand more about SCD. CONCLUSIONS: Adolescents with SCD in a rural community identify potential barriers in the transition to adult health care. Several barriers mirror what young adults report encountering. A rural SCD transition clinic can provide individualized preparation to promote a successful transition to adulthood.