Transition together: a study of pediatric patients with sickle cell disease as they transition to adult health care

Introduction: Improvement in medical care for sickle cell patients, translating into improvement in survival, has created the need for an active and intentional process of transition from pediatric to adult oriented health care. Objective: The purpose of this study was to determine the perspectives of adolescents and young adults with sickle cell disease as they prepare to transition, and to evaluate their current health care knowledge base and skills. Methods: A sample of 18 pediatric sickle cell patients age 15-22 years were recruited from a comprehensive Sickle Cell Center. Two sections of a four part questionnaire containing open- and closed-ended questions were assessed in order to explore these patients’ expectations and concerns about the transition process, and to evaluate their self-management of sickle cell disease. Results: Themes identified from the open-ended questions include: 1) Apprehension to Leaving Pediatric Care, 2) Forming New Relationships with Adult Providers, 3) Growing Up and Responsibility, 4) Worries Regarding Readiness and Support, and 5) Active Role in Transition. Statistical analysis of the close-ended questions revealed that patients appeared to have similar levels of independence in performing skills related to “Knowledge of Health Issues/Diagnosis, “Being Prepared”, and “Taking Charge”. However, there was a significantly lower level of independence in skills related to “Preparing for Legal/Other Issues After Age 18”. Overall, level of independence/readiness seemed to not be influenced by patients’ age, gender, or disease type. Discussion: Patients’ expectations and concerns about transition were mostly related to issues regarding patients’ perceived readiness for transition and the amount of support and understanding they receive from various health care providers. Additionally, continued monitoring and addressing of items in which the patient states he/she needs assistance with to achieve independence will be essential in the transition process. Conclusions and Public Health Significance: Transition from pediatric to adult care providers is a crucial step in the care of individuals with sickle cell disease. By eliciting the expectations and concerns of these patients’ and evaluating their knowledge base and skills, we are able to gather further insight into barriers to transition, and begin to develop a plan to address these obstacles