The effect of cytomegalovirus retinitis on the quality of life of patients with AIDS in the era of highly active antiretroviral therapy

Purpose To evaluate the effect of cytomegalovirus (CMV) retinitis on quality of life (QOL) in patients with the acquired immune deficiency syndrome (AIDS). Design Enrollment data from a multicenter, prospective cohort study. Participants Patients ≥13 years of age with AIDS in three groups: no CMV retinitis, 709 patients; long-standing CMV retinitis (diagnosed a median of 34.5 months previously), 212 patients; and newly diagnosed CMV retinitis (diagnosed ≤45 days previously), 50 patients. Methods Patients were enrolled at 19 centers throughout the United States. CMV retinitis status was determined by ophthalmoscopy. Vision-related QOL was assessed with a questionnaire designed for patients with CMV retinitis. General health-related QOL was evaluated with a modified version of the Medical Outcomes Survey–HIV instrument. Health utility was measured with the EuroQol instrument. Main outcome measures Patient-reported vision-related QOL, general health-related QOL, and health utility. Results All domains of vision-related QOL were substantially lower in both the long-standing and newly diagnosed CMV retinitis groups than in the group with no CMV retinitis. The long-standing CMV retinitis group was similar to the no CMV retinitis group in most general health-related QOL domains and in health utility measures. The newly diagnosed CMV retinitis group scored substantially worse than the other groups in many of the general health-related QOL domains and in visual analog scale–measured health utility. Adjustment of selected scale scores for demographic characteristics and for CD4 + T-cell count, human immunodeficiency virus viral load, and use of highly active antiretroviral therapy (HAART) attenuated most of the differences in general health-related QOL, except that physical function scores remained significantly lower in the newly diagnosed CMV retinitis group. Adjustment did not alter the pattern of vision-related QOL results. Conclusions These results suggest that in the HAART era, CMV retinitis is associated with reduced vision-related QOL in patients both with newly diagnosed and with long-standing disease, even though patients with long-standing CMV retinitis seem to have general health-related QOL and health utility similar to that of patients with AIDS who do not have CMV retinitis. Newly diagnosed CMV retinitis also is associated with lower general health-related QOL in most domains and with lower health utility.