Rachel Margolis1, Lori Wiener2, Maryland Pao3, Harry L Malech4, Steven M Holland1, Patricia Driscoll5. 1. Laboratory of Clinical Infectious Diseases, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Maryland. 2. Pediatric Oncology Branch, National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, Maryland. 3. National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland. 4. Laboratory of Host Defenses, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Maryland. 5. Intramural Clinical Management and Operations Branch, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Maryland. Electronic address: driscollp@niaid.nih.gov.
Abstract
PURPOSE: Children with chronic illnesses are living longer, prompting health care provider attention to the transition from pediatric to adult care. Transition of care is successful when youth are independent in managing their health. The aims of this study were to identify the strengths and barriers to transition from pediatric to adult care and to determine strategies that could enhance the transition process. METHODS: A survey was administered via a structured interview to 33 young adult participants (19-27 years of age), living with chronic granulomatous disease all of whom transitioned from pediatric to adult care. The participants were predominately male (88%) and Caucasian (73%). Topics covered in the survey included understanding of disease and treatment, adherence, advance care planning, and barriers to transition. Data were analyzed using a conventional content analysis approach. RESULTS: Seventy-six percent of the participants did not understand their disease process and only 50% understood their prophylactic medication regimen. Seventy-five percent of participants perceived their transition as uneventful. Ninety-four percent were independent in self-management skills such as making appointments and 90% in refilling prescriptions. More than half of the participants thought that the transition process needed improvement. Specific suggestions to create a practical approach to transition were offered. CONCLUSIONS: Gaps in disease-related knowledge and transition planning were identified by adolescents and young adults living with chronic granulomatous disease. The findings suggest the need for enhancing the transition process utilizing interdisciplinary collaboration to develop a transition policy and program. Published by Elsevier Inc.
PURPOSE:Children with chronic illnesses are living longer, prompting health care provider attention to the transition from pediatric to adult care. Transition of care is successful when youth are independent in managing their health. The aims of this study were to identify the strengths and barriers to transition from pediatric to adult care and to determine strategies that could enhance the transition process. METHODS: A survey was administered via a structured interview to 33 young adult participants (19-27 years of age), living with chronic granulomatous disease all of whom transitioned from pediatric to adult care. The participants were predominately male (88%) and Caucasian (73%). Topics covered in the survey included understanding of disease and treatment, adherence, advance care planning, and barriers to transition. Data were analyzed using a conventional content analysis approach. RESULTS: Seventy-six percent of the participants did not understand their disease process and only 50% understood their prophylactic medication regimen. Seventy-five percent of participants perceived their transition as uneventful. Ninety-four percent were independent in self-management skills such as making appointments and 90% in refilling prescriptions. More than half of the participants thought that the transition process needed improvement. Specific suggestions to create a practical approach to transition were offered. CONCLUSIONS: Gaps in disease-related knowledge and transition planning were identified by adolescents and young adults living with chronic granulomatous disease. The findings suggest the need for enhancing the transition process utilizing interdisciplinary collaboration to develop a transition policy and program. Published by Elsevier Inc.
Entities:
Keywords:
Adolescent and young adult; Chronic granulomatous disease; Health care self-management; Health care transition; Pediatric onset chronic illness