The widespread use of antiretroviral therapy has significantly reduced both mortality and morbidity from perinatally acquired HIV infection in the developed world. HIV infection is now considered a chronic condition and many, if not most children, are living to adulthood. Assessment of health related quality of life (QOL) provides a framework to integrate objective indicators and health and illness with the lived experience of, orsubjective reality, of children, youth, and their families. An understanding of the impact of the disease and its treatment on QOL is needed to develop research based nursing interventions.
The specific aims of the project are to 1) characterize QOL and longitudinal patterns of change in QOL outcomes in children and youth with HIV infection 2) identify demographic, social, disease status, treatment, and health care utilization factors that predict longitudinal changes in QOL outcomes 3) develop a conceptual model that characterizes the effects of specific factors that predict longitudinal changes in QOL and 4) characterize the influence of HIV symptoms on QOL outcomes in the domains of health perceptions, physical, psychological, and social role functioning. A collaboration of the School of Nursing at the University of Medicine and Dentistry of New Jersey and the Graduate School of Nursing, University of Massachusetts at Worcester, this study will use national data available through a prospective, observational, longitudinal study of children and youth (n=1,993) from birth to 25 years with HIV infection (Pediatric AIDS Clinical Trials Group Protocol 219/219C). Knowledge development about QOL and the factors that affect it is a prerequisite to implementing effective nursing interventions and clinical programs to support and improve QOL in this vulnerable population of children. The findings will be of significant use to nurses and other health care providers, researchers, insurers, and policy makers throughout the world.
| Howland, Lois C; Storm, Deborah S; Crawford, Sybil L et al. (2007) Negative life events: risk to health-related quality of life in children and youth with HIV infection. J Assoc Nurses AIDS Care 18:3-11 |
| Storm, Deborah S; Boland, Mary G; Gortmaker, Steven L et al. (2005) Protease inhibitor combination therapy, severity of illness, and quality of life among children with perinatally acquired HIV-1 infection. Pediatrics 115:e173-82 |
