Measuring health related quality of life among women living with HIV K.A. McDonnell 1,2 , A.C. Gielen 1,2 , A.W. Wu 1,2 , P. O'Campo 1,3 & R. Faden 1,2 1 School of Hygiene and Public Health, Johns Hopkins University, Baltimore, MD, USA; Departments of 2 Health Policy and Management; 3 Population and Family Health Sciences Accepted in revised form 30 November 2000 Abstract Although women had been under recognized in the literature on HIV/AIDS, increasing numbers of studies have focused on the lives and experiences of women living with HIV/AIDS. Areas of research in which the study of women and HIV continues to be noticeably lacking include health related quality of life (HRQOL). This paper describes HRQOL in an inner city sample of 287 HIV positive non-pregnant women, interviewed as part of a larger multi-site CDC funded study of the reproductive health of women. The average age of the respondents was 33 years and women had known their HIV status an average of 41 months. HRQOL was assessed using a 17-item modi®ed version of the Medical Outcomes Study-HIV Health Survey and demonstrated acceptable internal consistency (0.64±0.89) and variability. Women in our study were similar to other HIV-positive female samples and reported lower levels of well-being and functioning than some HIV-positive male samples. Women's responses to individual items and areas of potential need for health care are discussed. Examination of HRQOL in women with HIV can aid in the comparison of how women and men are aected by HIV and can help health care professionals identify needed services and include possible interventions to promote quality of life. Key words: HIV/AIDS, Measurement, Quality of life, Women Introduction Over the past decade the status of HIV and AIDS among women living in the United States (US) has risen from an anomaly to that of a major public health problem. While segments of the population have seen decreasing HIV/AIDS incidence rates, the number of women in the US living with HIV/ AIDS is increasing steadily. National surveillance ®gures indicate that women now account for 23% of all newly diagnosed AIDS cases in the US [1], furthermore, women living with HIV/AIDS are disproportionally low income and African-Amer- ican or Hispanic [1, 2]. Although African-Ameri- can and Hispanic women constitute less than one- ®fth of the US female population, they represent four-®fths (80%) of all US women living with AIDS [1]. Among women living with HIV, the mode of transmission is primarily through shared blood products from intravenous drug use, or unprotected sex with a known intravenous drug user. The Center for Disease Control and Pre- vention estimates that among cumulative AIDS cases in African-American women, 47% were infected through heterosexual contact and 49% through injecting drug use [1]. Although no cure exists today, pharmacological measures have been developed that can prolong life for people living with HIV (e.g. AZT and protease inhibitors). Increasing life expectancy for people living with HIV makes quality of life issues critically important for patients and for providers of medical and social services. Many studies have evaluated treatment outcomes using quality of life measures and while researchers are examining the Portions of the paper were presented at the National Confer- ence on Women and HIV, Los Angeles, May 1997. Quality of Life Research 9: 931±940, 2000. Ó 2001 Kluwer Academic Publishers. Printed in the Netherlands. 931