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Negative Life Events: Risk to Health-Related Quality of Life in Children and Youth With HIV Infection

https://doi.org/10.1016/j.jana.2006.11.008Get rights and content

Children and youth with perinatally acquired HIV infection are living longer because of improved drug therapies, but they may be at risk for poor health-related quality of life (HRQOL) outcomes because of nondisease factors. Families affected by HIV disease are more likely to experience major negative life events (NLEs). The effects of NLEs, shown to impact HRQOL in children with other chronic illnesses, have not been evaluated in children with HIV infection. The primary objective of this study was to determine if NLEs occurring in the previous 12 months were associated with increased risk for poorer outcomes in three measures of HRQOL (health perception, behavior problems, and symptom distress) in a cohort of children and youth with HIV infection. The authors conducted a cross-sectional analysis of data determined in 1999 from 1,018 children and youth 5 to 21 years of age enrolled in a longitudinal follow-up study. Multivariate logistic regressions estimated the odds for worse HRQOL outcomes. Children and youth with one or more NLEs had significantly lower health perceptions, more behavior problems, and greater symptom distress than children with no reported NLEs. The occurrence of NLEs may present a significant nondisease risk for diminished HRQOL among children and youth challenged by HIV disease. Nursing efforts to support these younger patients and their families sustaining major family disruption caused by NLEs may improve overall health outcomes in this vulnerable population.

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Background

HIV infection among children and in the United States is primarily the result of perinatal or “vertical” transmission of virus from infected mother to infant (Lindegren, Steinberg, & Byers, 2000). Mothers of perinatally infected children are more likely to be single parents who are more socially isolated, have limited financial resources, have a history of substance abuse, and facing the significant personal challenges of caring for their own HIV infection (Lindegren et al., 1999). Previous

Methods

The authors conducted a cross-sectional analysis of data from participants 5 to 21 years old with documented HIV infection who were on-study during 1999 in the Pediatric Late Outcomes Study, Pediatric AIDS Clinical Trials Group (PACTG) Protocol 219. This protocol is a multisite, prospective, observational cohort study sponsored by the PACTG. The study protocol was reviewed and approved by the institutional review board at each clinical site enrolling subjects. Formal written consent from the

Results

Table 1 summarizes the sociodemographic and HIV disease-related characteristics of the study sample. The median age of children and youth in this sample was 9.5 years (range 5.0-21.4 years), and approximately half were male. The majority (83%) of the sample was non-White. Approximately 40% of the participants were in the care of their biological parents. Almost all (98%) were taking one or more antiretroviral drugs with the majority (76%) taking two or more drugs (this includes approximately

Discussion

The purpose of this study was to assess the risk of lower scores in three health-related QOL (health perceptions, symptom distress and behavior problems) associated with reported NLEs among a group of children and youth age 5 to 21 years with HIV infection and to explore the nursing implications of these results. Adjusting for sociodemographic and immune function variables, those subjects who reported one or more negative life events had significantly greater risk for having a poorer score for

Conclusions

This report examined the risk of lower HRQOL measures among HIV-positive children and youth as a result of exposure to negative life events. Illness and NLEs are important and independent factors influencing health status and HRQOL in children and youth. The authors have shown a statistically significant association between individual and total reported negative life events and the risk of lower health perception, greater symptom distress, and more behavior problems in this sample of children

Acknowledgements

This work was supported in part by the Pediatric AIDS Clinical Trials Group of the National Institute of Allergy and Infectious Diseases and the Pediatric-Perinatal HIV Clinical Trials Network of the National Institute of Child Health and Human Development, and by the National Institute of Nursing Research, R01 NR07975 (Storm, PI). The authors thank Dr. Jane Zapka for her very helpful early reviews of this manuscript. The authors acknowledge and thank the children and their families who are

Lois C. Howland, DrPH, MS, RN, is a research fellow, Center for Biobehavioral Clinical Research, School of Nursing, Virginia Commonwealth University, Richmond.

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    Lois C. Howland, DrPH, MS, RN, is a research fellow, Center for Biobehavioral Clinical Research, School of Nursing, Virginia Commonwealth University, Richmond.

    Deborah S. Storm, PhD, RN, is director for research and evaluation, François-Xavier Bagnoud Center, School of Nursing, University of Medicine and Dentistry of New Jersey, Newark.

    Sybil L. Crawford, PhD, is a research associate professor, Division of Preventive and Behavioral Medicine, Department of Medicine, University of Massachusetts Medical School, Worcester.

    Yunsheng Ma, PhD, is an assistant professor, Division of Preventive and Behavioral Medicine, Department of Medicine, University of Massachusetts Medical School, Worcester.

    Steven L. Gortmaker, PhD, is a professor, Department of Society, Human Development, and Health, Harvard School of Public Health, Boston.

    James M. Oleske, MD, MPH, is a professor, Department of Pediatrics, School of Medicine, University of Medicine and Dentistry of New Jersey, Newark.

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