Impact of Disclosure of HIV Infection on Health-Related Quality of Life Among Children and Adolescents With HIV Infection
- 1 March 2009
- journal article
- Published by American Academy of Pediatrics (AAP) in PEDIATRICS
- Vol. 123 (3), 935-943
- https://doi.org/10.1542/peds.2008-1290
Abstract
BACKGROUND. Little is known concerning the impact of HIV status disclosure on quality of life, leaving clinicians and families to rely on research of children with other terminal illnesses.OBJECTIVES. The purpose of this work was to examine the impact of HIV disclosure on pediatric quality of life and to describe the distribution of age at disclosure in a perinatally infected pediatric population.METHODS. A longitudinal analysis was conducted of perinatally HIV-infected youth ≥5 years of age enrolled in a prospective cohort study, Pediatric AIDS Clinical Trials Group 219C, with ≥1 study visit before and after HIV disclosure. Age-specific quality-of-life instruments were completed by primary caregivers at routine study visits. The distribution of age at disclosure was summarized. Six quality-of-life domains were assessed, including general health perception, symptom distress, psychological status, health care utilization, physical functioning, and social/role functioning. For each domain, mixed-effects models were fit to estimate the effect of disclosure on quality of life.RESULTS. A total of 395 children with 2423 study visits were analyzed (1317 predisclosure visits and 1106 postdisclosure visits). The median age at disclosure was estimated to be 11 years. Older age at disclosure was associated with earlier year of birth. Mean domain scores were not significantly different at the last undisclosed visit compared with the first disclosed visit, with the exception of general health perception. When all of the visits were considered, 5 of 6 mean domain scores were lower after disclosure, although the differences were not significant. In mixed-effects models, disclosure did not significantly impact quality of life for any domain.CONCLUSIONS. Age at disclosure decreased significantly over time. There were no statistically significant differences between predisclosure and postdisclosure quality of life; therefore, disclosure should be encouraged at an appropriate time.Keywords
This publication has 36 references indexed in Scilit:
- Disclosure of an HIV Diagnosis to Children: History, Current Research, and Future DirectionsJournal of Developmental & Behavioral Pediatrics, 2007
- Protease Inhibitor Combination Therapy, Severity of Illness, and Quality of Life Among Children With Perinatally Acquired HIV-1 InfectionPEDIATRICS, 2005
- Agreement between child self-report and parent proxy-report to evaluate Quality of Life in Children with CancerPsycho‐Oncology, 2005
- Disclosure Model for Pediatric Patients Living with HIV in Puerto RicoJournal of Developmental & Behavioral Pediatrics, 2004
- Diagnostic Disclosure to HIV-Infected Children: How Parents Decide when and what to TellClinical Child Psychology and Psychiatry, 2002
- Disclosure of Illness Status to Children and Adolescents With HIV InfectionPediatrics, 1999
- Disclosure of the Diagnosis of HIV/AIDS to Children Born of HIV-infected MothersAIDS Patient Care and STDs, 1999
- Linking clinical variables with health-related quality of life. A conceptual model of patient outcomesJAMA, 1995
- Does “Telling” Less Protect More? Relationships Among Age, Information Disclosure, and What Children with Cancer See and FeelJournal of Pediatric Psychology, 1991
- PSYCHOSOCIAL ASPECTS OF CHILDHOOD CANCER: A REVIEW OF THE LITERATUREJournal of Child Psychology and Psychiatry, 1986