Measuring visual function and quality of life in patients with cytomegalovirus retinitis: Development of a questionnaire

Objective: To develop and test a brief questionnaire designed to assess visual symptoms, visual function in daily activities, and impact of treatment administration in patients with cytomegalovirus retinitis related to acquired immunodeficiency syndrome. Design: Observational cross-sectional study. Patients were recruited in June and July 1992. Setting: Seven university- based sites participating in the Studies of Ocular Complications of AIDS. Patients: Twenty-six subjects enrolled in a randomized trial that compared foscarnet and ganciclovir for the treatment of cytomegalovirus retinitis. Main Outcome Measures and Analysis: Distributions of scores, reliability, and validity of newly developed scales to assess visual function, visual symptoms, and global vision. Spearman rank correlations with 95% confidence intervals were used to test hypothesized relationships between scale scores, visual acuity, visual field, and findings from visual examination. Results: The final 18-item self-administered questionnaire required 5 minutes to complete. The new scales had high internal consistency (Cronbach α=.81 to .94). As hypothesized, patient-reported vision scores decreased with greater abnormalities found on ophthalmologic examination. Visual symptoms were most strongly related to findings in the worse eye. Visual function and global vision scores were moderately correlated with findings from visual testing and examination, and less strongly related to general health perceptions. Patients reported considerable impairment: 42% reported blurred vision; 40%, difficulty reading; 44%, difficulty driving; and 40%, that treatment interfered with social activities; 50% reported substantial trouble with their vision. Conclusions: The brief questionnaire developed to assess patient-reported visual function in cytomegalovirus retinitis appears reliable and valid as a measure of performance of vision-related activities, visual symptoms, and the impact of treatment administration. Further research is needed to test its utility as an outcome measure in longitudinal studies of cytomegalovirus retinitis.