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

NCT02233036 | Completed

• 2 other identifiers: 99991408814-I-N088
• Study Type: observational
• Target: 33
• Locations: 1 country
• Sites: 1

Brief 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.

Conditions

CGD

Keywords

Young Adults; Transfer; Chronic Disease

Outcome Measures

Primary Outcomes (1)

• Successful transition to adult care

  After completion of interview

Secondary Outcomes (1)

• To explore strategies that young adult patients believe mayenhance the process of transition from pediatric to adult care

  1 year

Eligibility Criteria

• Age: 18 Years - 26 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64)

You may qualify if:

• 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

Sponsors & Collaborators

• National Institute of Allergy and Infectious Diseases (NIAID): lead

Study Sites (1)

National Institute of Allergy and Infectious Diseases (NIAID), 9000 Rockville Pi

Bethesda, Maryland, 20892, United States

Location

Related Publications (3)

• Fernandes SM, Landzberg MJ. Transitioning the young adult with congenital heart disease for life-long medical care. Pediatr Clin North Am. 2004 Dec;51(6):1739-48, xi. doi: 10.1016/j.pcl.2004.07.006.

  PMID: 15561183 BACKGROUND

• Kennedy A, Sloman F, Douglass JA, Sawyer SM. Young people with chronic illness: the approach to transition. Intern Med J. 2007 Aug;37(8):555-60. doi: 10.1111/j.1445-5994.2007.01440.x.

  PMID: 17640188 BACKGROUND

• Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang IC, Livingood W, Reiss J, Wood D. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ--Transition Readiness Assessment Questionnaire. J Pediatr Psychol. 2011 Mar;36(2):160-71. doi: 10.1093/jpepsy/jsp128. Epub 2009 Dec 29.

  PMID: 20040605 BACKGROUND

MeSH Terms

Conditions

Chronic Disease

Condition Hierarchy (Ancestors)

Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Study Officials

• Patricia R Driscoll, R.N.

  National Institute of Allergy and Infectious Diseases (NIAID)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: RETROSPECTIVE
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: September 4, 2014
• First Posted: September 8, 2014
• Study Start: March 26, 2014
• Primary Completion: January 11, 2016
• Study Completion: January 10, 2017
• Last Updated: April 5, 2018

Record last verified: 2017-01-10

Locations

US (1)