Adolescents and Young Adults with Sickle Cell Disease Transition Readiness to Adult Care

Abstract

Purpose: This project applied existing knowledge of the need for transition programs and perceived readiness for transition of healthcare responsibility and transfer among adolescents and young adults (AYAs) with sickle cell disease (SCD) and their parents. The data from this project will be used to guide the development of an intervention program that prepares AYAs and their families for transition from pediatric to adult care. Significance: An increasing number of adolescents and young adults are surviving into adulthood and the need to transition from pediatric to adult care increases. In the United States, it is estimated that greater than 90% of individuals with SCD now reach 21 years of age, and the majority live into their forties. Thus transition has become a major focus. Poor transition services in patients with chronic illnesses have been associated with unnecessary dependency of the patient on their parents or guardians, developmental difficulties, psychosocial delay, lack of continuity of care, disengagement from services and increased morbidity and mortality with subsequent additional health care costs. Self-care management has been identified as essential to transition readiness among adolescents with chronic illnesses. Feeling more self-efficacious in skills for independent hospital visits and a greater perceived independence during consultations was found to be most strongly associated with being ready to transfer. Methods: This study was conducted at a large urban children’s hospital in the Mid-Atlantic region. A convenience sample of 60 AYAs between 14 - 21 years of age and their parents or legal guardians were surveyed. Parallel versions of the Readiness to Transition Questionnaire were administered to AYAs and their parents that assessed health care responsibility behaviors of AYAs and parental involvement and overall readiness to assume complete responsibility for health care and overall readiness to transfer from pediatric to adult care. Results: AYAs perception of overall readiness to assume compete responsibility for their health care had a statistically significant association with the adolescent’s readiness to transfer (beta= .43, p = .000). AYAs did not perceive parental involvement as indicative of transition readiness; however, they did view assuming certain health care responsibilities, such as explaining their medical condition to others and knowing details about insurance as indicative of transition readiness. Parents perceived AYA’s responsibility for health care behaviors and less parental involvement as indicative of transition readiness. Older age was associated with greater perception of overall transition readiness for both parent and AYA (r = .479, p = .000). Disease severity was not significantly associated with overall transition readiness. Conclusion: This project reports a quantitative assessment of AYAs and parents’ perceived readiness to transition from pediatric to adult care as they prepare for the process of transition. So as to shift control of self-care management behaviors from parent to adolescent, both patients and parents identified the need for less parental involvement. These provide information to tailor a transition program that is unique for each individual AYA and their parent.