Health Care Transition and Patient-Perceived Quality of Life in Sickle Cell Disease

Because of the high mortality rate of sickle cell disease (SCD) patients who do not continue care into adulthood, researchers have paid increasing attention to the health care transition experiences of SCD patients. However, a gap exists regarding patients\u27 perspectives of care transition related to their quality of life. The purpose of this phenomenological study, guided by the biosocial-ecological systems model, was to explore the lived health care transition experiences of SCD patients in relation to their health-related quality of life. Data collection included open-ended interviews with 12 patients in the Southwestern United States. Colaizzi\u27s (1978) method of phenomenological data analysis was used to identify themes, including resistance to transition; inadequate transitional support; lack of autonomy and education; fear, anxiety, and stress; and managing other life changes. Results contribute to the existing research on SCD health care transition, broaden understanding of the transition process and provide guidance for improving transition programs