Transition From Pediatric to Adult Care by Young Adults With Chronic Granulomatous Disease: The Patient's Viewpoint

Rachel Margolis, Lori Wiener, Maryland Pao, Harry L. Malech, Steven M. Holland, Patricia Driscoll

Research output: Contribution to journalArticlepeer-review


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.

Original languageEnglish (US)
Pages (from-to)716-721
Number of pages6
JournalJournal of Adolescent Health
Issue number6
StatePublished - Dec 2017
Externally publishedYes


  • Adolescent and young adult
  • Chronic granulomatous disease
  • Health care self-management
  • Health care transition
  • Pediatric onset chronic illness

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Public Health, Environmental and Occupational Health
  • Psychiatry and Mental health

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