Evaluating the Transition From Pediatric to Adult Care Among Adolescents With Chronic Granulomatous Disease

Children with chronic illnesses are thriving well into adulthood due to ongoing medical advances. Many healthy and typically developing 18-year-olds should be able to manage a transition from pediatric to adult care, but this transition can be challenging for adolescents with chronic illness. A poor transition to adult care can result in medical, social and educational issues for patients, families and the medical team. At issue are questions of independence and self-management: are young adult patients prepared to travel to NIH alone? Are they prepared to speak with physicians about their disease process and medications? Are they ready to give informed consent for studies in which they have been participating?

The National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health (NIH) has several hundred adolescents enrolled in clinical trials, many of whom rely on NIH providers for specialized care. No formal program exists to assist these patients in the transition from pediatric to adult care. Pediatric inpatients are admitted to the adult inpatient unit when they turn 18 with little knowledge of the policy differences between the units.

The investigators propose a retrospective exploratory descriptive study to (a) identify and describe experiences that young adults found to enable or hinder their transition and (b) explore these patients ideas for enhancing the transition process. A semi-structured questionnaire administered by phone or face to face to approximately 40 young adults with chronic granulomatous disease (CGD) will gather qualitative and quantitative information about the use of inpatient and outpatient services at the NIH Clinical Center prior to and since the subjects 18th birthdays. Data will be used to develop a program to help NIAID pediatric patients with CGD transition successfully to adult care.

-INCLUSION CRITERIA:

• 18 to 24 years of age during January 1, 2011 to December 31, 2012
• Documented diagnosis of CGD
• Enrolled in one of the following three NIAID protocols that investigate CGD (and other immunodeficiencies):

• Detection and Characterization of Host Defense Defects (93-I-0119), PI: Dr. Steven Holland
• Screening and Baseline Assessment of Patients with Abnormalities of Immune Function (05-I-0213), PI: Dr. Harry Malech
• Screening Protocol for Detection and Characterization of Infections and Infection (07-I-0033), PI: Dr. Steven Holland
• Record of a visit to NIH prior to 18th birthday and at least one visit during January 1, 2011 to December 31, 2012
• Health status sufficient to participate in an interview, as determined by patient self-report at the start of the interview.
• Fluency in English