Quality of life with macular degeneration: perceptions of patients, clinicians, and community members.

BACKGROUND/AIMS Age related macular degeneration (ARMD) is a common ophthalmological disorder that can significantly impair a patient's ability to function independently and potentially have a dramatic impact on health related quality of life. The aim of this study is to evaluate the quality of life of patients with ARMD, through the use of utility evaluation, and assess whether clinicians and healthy volunteers appreciate the impact of ARMD on health related quality of life. METHODS A standardised questionnaire using the time-tradeoff method of utility analysis was created to assess health related quality of life. This questionnaire was distributed to 115 patients with ARMD. A similar questionnaire was distributed to 142 healthy volunteers and 62 clinicians who were asked to assume that they had ARMD. Comparisons were made among the responses from the members of the three groups. RESULTS There was a significant difference in the utility scores among respondents with mild, moderate, and severe ARMD when compared to members of the general public and clinicians who were asked to assume they had each severity of ARMD. For mild ARMD the mean utility scores were 0.932, 0.960, and 0.832, for the general public, clinicians, and patients respectively (F = 21.7; p <0.001). No significant difference was found between the community members and clinicians (p <0.166); however, the patient group differed significantly from the general public (p<0.001) and clinician (p <0.001) groups. The utility scores for moderate ARMD for the general public, clinicians, and patients were 0.918, 0.877, and 0.732, respectively. (F = 34.6, p <0.001). There was no significant difference between the general public and clinicians (p <0.143); however, the patient group differed significantly compared with the general public (p <0.001) and clinician (p <0.001) groups. The utility scores for people with severe ARMD in the general public, clinician, and patient groups were 0.857, 0.821, and 0.566, respectively (F = 45.5; p <0.001). No significant difference was shown between the community members and clinicians (p <0.386); however, a significant difference was seen when comparing the patient group with the community member and clinician (p<0.001) groups. CONCLUSION Clinicians and community members may greatly underestimate the impact of mild, moderate, and severe ARMD on health related quality of life.