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PEDIATRICS Vol. 109 No. 6 June 2002, pp. 1144-1152

The Prevalence of Pain in Pediatric Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome as Reported by Participants in the Pediatric Late Outcomes Study (PACTG 219)

Denise M. Gaughan, MPH*, Michael D. Hughes, PhD*, George R. Seage, III, DSc, MPH*,{ddagger}, Peter A. Selwyn, MD, MPH§, Vincent J. Carey, PhD*, Steven L. Gortmaker, PhD*,|| and James M. Oleske, MD, MPH PACTG 219 Team

* Center for Biostatistics in AIDS Research, Harvard School of Public Health, Boston, Massachusetts
{ddagger} Department of Epidemiology, Harvard School of Public Health, Boston, Massachusetts
§ Department of Family Medicine and Community Health, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York
|| Department of Health & Social Behavior, Harvard School of Public Health, Boston, Massachusetts
Department of Pediatrics, University of Medicine and Dentistry of New Jersey Medical School, Newark, New Jersey

--> Objectives. As the life expectancy of children with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) increases, quality-of-life outcomes are of increasing concern. The prevalence of pain in adults with AIDS ranges from 40% to 60%, depending on stage of illness. There is limited research concerning pain in HIV-infected children and youth.

Design. The General Health Assessment for Children was administered to caregivers of HIV-infected children and youth enrolled in the Pediatric Late Outcomes Study (PACTG 219), a prospective cohort study. Pain is assessed over the previous month with 7 questions. For the purpose of this analysis, we defined pain as the presence of pain of at least moderate intensity. Participants were observed from January 1, 1996, to December 31, 1999.

Results. A total of 985 HIV-positive participants had a baseline pain evaluation in 1995. The prevalence of pain remained relatively constant during each year of observation, averaging 20%. Lower CD4+ T-lymphocyte percentage, female gender, and an HIV/AIDS-related diagnosis were highly associated with an increased risk of reported pain. Pain was also independently associated with increased risk of death. After adjusting for CD4 percentage, use of combination therapy including protease inhibitors, comorbid diagnoses, and other sociodemographic characteristics, individuals reporting pain were over 5 times more likely to die than those not reporting pain (hazard ratio = 5.07; 95% confidence interval = 3.23–7.95).

Conclusions. Pain is a frequently encountered symptom in children and youth with HIV disease and is also associated with increased mortality. These findings emphasize the importance of pain management in this population.

Key Words: pain • HIV/AIDS • pediatrics • protease inhibitors • generalized estimating equations • proportional hazards regression

Abbreviations: HIV, human immunodeficiency virus • AIDS, acquired immunodeficiency syndrome • PI, protease inhibitor • PACTG, Pediatric AIDS Clinical Trials Group • GHAC, General Health Assessment for Children • OR, odds ratio • CI, confidence interval


Received for publication Oct 3, 2001; Accepted Feb 20, 2002.


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