Pediatric Nurse Practitioner in the Center for Cancer and Blood Disorders at Children’s National Health System, Washington, D.C., working primarily with Sickle Cell Disease. Received BSN from Howard University College of Nursing, Washington, D.C.; MSN/PNP from the University of Utah and Doctor of Nursing practice from the University of Maryland, Baltimore with an emphasis on “Adolescent and Young Adult Transition from Pediatric to Adult Care in the Sickle Cell Disease Population”. An Assistant Professor at George Washington University (Washington, D.C.), School of Pediatric Medicine and Health Sciences. Involved in several research projects and has authored several manuscripts and book chapters.
Background: Transition of medical care from pediatrics to adult care can be challenging and often difficult. Until the 1970s, only half of patients diagnosed with SCD reached adulthood. Improvements in health care and researchare enabling patients to live longer, well into adulthood. As a result, there is a growing need to understand factors that influence readiness to transition. The aim of this study was to assess patients’ and parents’ knowledge of SCD and their readiness for transition into the adult healthcare systemand to learnhow to best prepare them for transition.
Methods:One hundred seventy one transition surveys were distributed during scheduled hematology clinic visits to a subset of sickle cell patients and their parents to assess knowledge of disease and comfort level regarding transition of care.The surveys were analyzed to determine differences of knowledge between different age groups and to identify knowledge gaps to be addressed during intervention.Of the 171 surveys completed there were; 0-4 group (32), 5-8 group (52), 9-11 group (24), 12-15 group (31), and 16-21 group (32).
Results: The majority of parents (69%) in the 0-4 age group did not know their child’s baseline hemoglobin. In the 5-8 age group, 63% of parents did not know their child’s baseline hemoglobin, however 72% parents in the 5-8 group was able to name their hematology provider. In the 12-15 age group 29 (94%) had plans to attend college, while 28 (88%) in the 16-21 had college plans.
Conclusion: The study demonstrated that most adolescents have adequate basic knowledge regarding their disease but lack the secondary skills necessary to transition care away from parents and become more independent. Conversations about transition should begin early, ideally by 12 years of age and an assessment for transition readiness should be ongoing to include and foster disease specific knowledge.
Audience Take Away:
1.Understand how disease knowledge affects readiness to transition from pediatric to adult care.
2. Learn how to prepare adolescents and young adult s for transition.
3. Assist in designing a Transition Program