The effect of diagnosis with HIV infection on health-related quality of life Shyoko Honiden 1,2 , Vandana Sundaram 1,3 , Robert F. Nease 4 , Mark Holodniy 1,2 , Laura C. Lazzeroni 5 , Andrew Zolopa 2 & Douglas K. Owens 1,3 1 VA Palo Alto Health Care System (111A), 3801 Miranda Avenue, Palo Alto, CA; 2 Stanford School of Medicine; 3 Center for Primary Care and Outcomes Research, Department of Medicine Stanford University, Stanford, CA (E-mail: owens@Stanford.edu); 4 Express Scripts Inc., Maryland Heights, MO; 5 Department of Health Research and Policy, School of Medicine Stanford University, Stanford, CA Accepted in revised form 6 June 2005 Abstract We sought to understand how diagnosis with HIV affects health-related quality of life. We assessed health- related quality of life using utility-based measures in a Department of Veterans Affairs (VA) clinic and a University-based clinic. Respondents assessed health-related quality of life regarding their current health, and retrospectively assessed their health 1 month prior to and 2 months after diagnosis with HIV infection. Sixty-six patients completed the study. The overall mean utilities for health 1 month before and 2 months after diagnosis were 0.87 (standard error 0.037), and 0.80 (0.043) ( p<0.005 by rank sign test), but the effect of diagnosis differed between the two clinics, with a substantial decrease in the university clinic and a small non-significant decrease in the VA clinic. The overall mean utility for current health was 0.85 (0.034), assessed on average 7.5 years after diagnosis. When asked directly whether diagnosis of HIV decreased health-related quality of life, 47% agreed, but 35% stated that HIV diagnosis positively affected health- related quality of life. Diagnosis with HIV decreased health-related quality of life at 2 months on average, but this effect diminished over time, and differed among patient populations. Years after diagnosis, al- though half of the patients believed that diagnosis reduced health-related quality of life, one-third reported improved health-related quality of life. Key words: HIV, Diagnosis, Quality of life, Retrospective study, Utility assessment Abbreviations: AIDS – acquired immune deficiency syndrome; CDC – Centers for Disease Control and Prevention; HAART – highly active antiretroviral therapy; HIV – human immunodeficiency virus; MOS- HIV – Medical Outcomes Study-HIV Health Survey; QOL – quality of life; TTO – time trade-off; VA – Department of Veterans Affairs Introduction Early identification of HIV infection is critical now that life prolonging therapy with highly active anti- retroviral therapy (HAART) is available. The Cen- ters for Disease Control and Prevention (CDC) recently launched an aggressive initiative to encourage more widespread voluntary testing and counseling in people at risk for HIV infection [1]. In addition, CDC guidelines continue to recommend routine voluntary testing in acute care settings with an HIV prevalence of 1% [2]. Although early iden- tification enables access to therapy, diagnosis of HIV infection, particularly in asymptomatic patients, could lead to diminished health-related quality of life as patients adjust to living with a chronic disease. Assessing health-related quality of life is impor- tant because patients care about both quality of Quality of Life Research (2006) 15: 69–82 Ó Springer 2006 DOI 10.1007/s11136-005-8485-x