The burden of neovascular age-related macular degeneration: a patient’s perspective

Kimberly L Spooner,1,2 Cleopatra T Mhlanga,1 Thomas H Hong,1 Geoffrey K Broadhead,1 Andrew A Chang1,2 1Sydney Institute of Vision Science, Sydney Retina, Sydney, NSW, Australia; 2Save Sight Institute, University of Sydney, Sydney, NSW, Australia Purpose: To quantify the burden and quality of life of patients and their caregivers in a cohort of patients with neovascular age-related macular degeneration (nAMD) in an Australian clinical setting.Methods: A total of 103 patients undergoing anti-vascular endothelial growth factor (VEGF) therapy for nAMD were asked to complete questionnaires relating to the financial and time burdens of nAMD.Results: All patients completed the questionnaires. Loss in productivity due to attendance of appointments was 4.4±1.7 hours per month, with additional time lost by caregivers. Financial strain was incurred by direct medical costs associated with intravitreal assessment and injections at an average of AU$199.2±$83.1 per month. Indirect costs incurred averaged $64.8±$79.7 per month. Qualitative indirect costs due to loss of productivity for the patient, unpaid caregivers, and loss of productivity due to premature mortality were also a considerable burden. Overall mean Visual Function Questionnaire and EuroQol 5D-3L scores were correlated with visual acuity and demonstrated patients’ subjective decline in quality of vision.Conclusion: Management of nAMD carries a substantial burden on patients and caregivers. These results provide important information in understanding the effect of anti-VEGF therapy among patients with nAMD. Together with the quality-of-life burden on the patients, the management of nAMD has a significant societal impact. Keywords: burden, treatment, anti-VEGF, age-related macular degeneration, Australia, patient perspective