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Long-Term Survival With HIV: Psychological and Behavioral Factors Associated With the Transition From Adolescence to Young Adulthood

Primary Purpose

HIV Infection

Status
Completed
Phase
Locations
United States
Study Type
Observational
Intervention
Sponsored by
National Cancer Institute (NCI)
About
Eligibility
Locations
Outcomes
Full info

About this trial

This is an observational trial for HIV Infection focused on measuring HIV Infection, Mental Health, Risk Behaviors, Post-Traumatic Stress Disorder, Youth, HIV, Long Term Survivor

Eligibility Criteria

undefined - undefined (Child, Adult, Older Adult)All SexesDoes not accept healthy volunteers

INCLUSION CRITERIA HIV-infected adolescents 13-24 years of age with documented HIV infection for greater than or equal to 13 years. On active protocol at NIH during the past 5 years. Willingness to sign informed consent. Ability to understand and read English. EXCLUSION CRITERIA Presence of psychotic symptoms. Cognitive impairment or full scale IQ less than or equal to 75. Not aware of HIV diagnosis.

Sites / Locations

  • National Cancer Institute (NCI)

Outcomes

Primary Outcome Measures

Secondary Outcome Measures

Full Information

First Posted
November 14, 2001
Last Updated
March 3, 2008
Sponsor
National Cancer Institute (NCI)
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1. Study Identification

Unique Protocol Identification Number
NCT00026806
Brief Title
Long-Term Survival With HIV: Psychological and Behavioral Factors Associated With the Transition From Adolescence to Young Adulthood
Official Title
Long-Term Survival With HIV: A Study of the Psychological and Behavioral Factors Associated With the Transition From Adolescence To Young Adulthood
Study Type
Observational

2. Study Status

Record Verification Date
June 2005
Overall Recruitment Status
Completed
Study Start Date
July 2001 (undefined)
Primary Completion Date
undefined (undefined)
Study Completion Date
June 2005 (undefined)

3. Sponsor/Collaborators

Name of the Sponsor
National Cancer Institute (NCI)

4. Oversight

5. Study Description

Brief Summary
This study will examine the emotional and behavioral aspects of long-term survival of HIV/AIDS among adolescents and young adults with HIV infection. HIV-infected individuals between 13 and 23 years of age may be eligible for this study. They must be aware of their HIV diagnosis, have been infected for at least 13 years and have been on an active NIH protocol during the past 5 years. In addition to the usual stresses of growing up, children with HIV infection may have spent much of their time in hospitals and may have lost parents, friends and other loved ones. This study will explore psychological aspects of growing up with HIV, including self esteem, possible risk behaviors, how disclosure to others changes over time, the commonness of anxiety and depression, and the impact that losses have had on the adolescents' emotional health. To gather this information, participants will be interviewed and asked to fill out a set of forms. Caregivers will also fill out forms. Patients who are not currently on an active NIH protocol will have the option of having a physical examination and routine blood work. The results will be sent to their home care provider.
Detailed Description
Children and adolescents with HIV/AIDS are living well beyond the life expectancy that was projected for them in the past. As the number of survivors of vertically or transfusion associated pediatric HIV disease increases, attention to the psychosocial adjustment of these adolescents and young adults becomes increasingly important. Studies in the late 1990s described child and adolescent survivors as generally well adjusted, though difficulties become more apparent as the child approached the age of 18. Nothing is known about these HIV positive youngsters as they enter late adolescence and young adulthood. This study will examine psychosocial factors associated with long-term survival of HIV/AIDS, including the prevalence of psychiatric diagnoses, risk behaviors, evaluation of self competence, and the impact that multiple losses has on the adolescents' emotional well-being. In addition, data will be collected from the primary caregivers on the prevalence of parenting stress compared to national norms. Subjects will include children who have been infected (either perinatally or through transfusion) for at least eight years and who are aware of their diagnosis.

6. Conditions and Keywords

Primary Disease or Condition Being Studied in the Trial, or the Focus of the Study
HIV Infection
Keywords
HIV Infection, Mental Health, Risk Behaviors, Post-Traumatic Stress Disorder, Youth, HIV, Long Term Survivor

7. Study Design

Enrollment
55 (false)

10. Eligibility

Sex
All
Accepts Healthy Volunteers
No
Eligibility Criteria
INCLUSION CRITERIA HIV-infected adolescents 13-24 years of age with documented HIV infection for greater than or equal to 13 years. On active protocol at NIH during the past 5 years. Willingness to sign informed consent. Ability to understand and read English. EXCLUSION CRITERIA Presence of psychotic symptoms. Cognitive impairment or full scale IQ less than or equal to 75. Not aware of HIV diagnosis.
Facility Information:
Facility Name
National Cancer Institute (NCI)
City
Bethesda
State/Province
Maryland
ZIP/Postal Code
20892
Country
United States

12. IPD Sharing Statement

Citations:
PubMed Identifier
8063915
Citation
Bose S, Moss HA, Brouwers P, Pizzo P, Lorion R. Psychologic adjustment of human immunodeficiency virus-infected school-age children. J Dev Behav Pediatr. 1994 Jun;15(3 Suppl):S26-33.
Results Reference
background
PubMed Identifier
2952939
Citation
Cadman D, Boyle M, Szatmari P, Offord DR. Chronic illness, disability, and mental and social well-being: findings of the Ontario Child Health Study. Pediatrics. 1987 May;79(5):805-13.
Results Reference
background
PubMed Identifier
1983856
Citation
Chang PN. Psychosocial needs of long-term childhood cancer survivors: a review of literature. Pediatrician. 1991;18(1):20-4.
Results Reference
background

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Long-Term Survival With HIV: Psychological and Behavioral Factors Associated With the Transition From Adolescence to Young Adulthood

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