Abstract
Abstract: :
Purpose: Clinical outcomes measurement in patients with age related macular degeneration (ARMD) has only been published to date in cross-sectional studies. We present a longitudinal study of health-related quality of life (HRQOL) using the National Eye Institute Visual Function Questionnaire (NEI-VFQ) and the Medical Outcomes Study 36 item survey (SF-36) to assess self-reported visual impairment and general functioning. Method: The included ARMD patients presented with occult choroidal neovascularisation (CNV) and visual acuity (VA) of 20/80 or better and no other ocular disease. Examinations at baseline, 6 weeks, 3, 6 and 12 month included ETDRS acuity, ophthalmoscopy, fluorescein and ICG angiography, fundus photography and the German versions of the SF-36 and NEI-VFQ. The NEIVFQ has 12 subscales: General health and Vision, Pain, Near-, Peripheral-, Colour and Distance vision, Driving, Vision specific: Role difficulties, Dependency, Social function, Mental health. Results: Sixty patients (32 female, 28 male) were included into the study. Mean age was 71. Overall NEIVFQ score was 80,7 in the patients with VA ≥ 20/32 in both eyes but only 60.4 with VA ≤ 20/63, relative to 88,8 in controls. The scales for near activity (NA) and driving (D) were the most informative with a mean score of 58 (NA) and 43,8 (D) at all time points in patients who lost vision compared to 80,4 (NA) and 64.8 (D) at baseline (P-value < 0,05). Subgroup analysis revealed that patients who had one unaffected fellow eye used it to compensate for their loss of vision in the affected eye: While patients with two affected eyes below reading vision (VA of 20/63) scored very low, those with a fellow eye of 20/32 or better almost scored like those with a VA over 20/32 in both eyes. At six weeks the sensitive domains dropped significantly in patients who lost more than 2 EDTRS lines. The follow-up at 12 weeks, 6 months and 12 months shows how scores in 6 different scales dropped further and then stabilised or even improved, although the VA was unchanged. Conclusion: The NEIVFQ appears to be a reliable instrument for the measurement of health related quality of life in ARMD over time. A loss of only two EDTRS lines results in a significant loss in HRQOL. If one eye is affected by ARMD, the fellow eye can compensate; however if both eyes are affected scores drop significantly. Our longitudinal study indicates that HRQOL stabilises and can even improve over time as patients adjust.
Keywords: 308 age-related macular degeneration • 536 quality of life • 353 clinical (human) or epidemiologic studies: outcomes/complications