Evaluating the Transition From Pediatric to Adult Care Among Adolescents With Chronic Granulomatous Disease
Condition: CGD
MeSH terms: Granulomatous Disease, Chronic
Study type: Observational

Summary: 
      Background:

      People who get chronic illnesses as children are living longer. When they turn 18, they
      switch from pediatric care to adult care. This can be a difficult change. Chronic
      Granulomatous Disease (CGD) is an inherited disease. It causes long-term, repeated
      infections. People with CGD are usually diagnosed when they are very young children.
      Researchers want to find out more about how young people with CGD handle the change to adult
      care. What they learn may make this easier for people with CGD in the future.

      Objective:

      - To identify what helped or hurt young adults with CGD as they went from pediatric to adult
      care.

      Eligibility:

      - Adults with CGD who were 18 24 years old between January 2011 and February 2014.

      Design:

        -  Participants will already be enrolled in NIH studies.

        -  Eligible people will get materials in the mail. They will get a letter with study
           information, an interview questionnaire, and an information sheet.

        -  Researchers will call participants 1 week after the packets are sent. They will talk
           about the study and find out if the person wants to join.

        -  An interview will be completed immediately or scheduled for the future. The interview
           will take about 45 minutes. The researcher will ask the participant about their disease.
           They will also ask about travel to NIH, being an outpatient or inpatient there, and
           legal documents.

        -  Researchers may contact the subjects again by phone if they need more information at any
           point during the study.
    

Detailed description: 
      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.
    

Observational model: Cohort
Time perspective: Retrospective
Keywords: Young Adults; Transfer; Chronic Disease