Physical, Psychosocial, and Practical Burden of Patients Receiving Care for Age-Related Macular Degeneration in Canada: A Mixed-Methods Qualitative Study.

Abstract

Purpose: Age-related macular degeneration (AMD) is a leading cause of irreversible vision loss. Documentation of the disease's description and treatment experience of Canadian patients is limited but of interest given the aging population and resultant implications for healthcare systems. A mixed-methods study was conducted to understand the challenges experienced by patients living in Canada with AMD to identify areas of need and for potential reform.

Patients and methods: Canadian residents with wet or dry AMD were eligible for participation in an online survey and one-on-one telephone interview regarding their disease experience. Participants were recruited via a not-for-profit stakeholder organization and an ophthalmology clinic. Surveys were completed from January-June 2020 and interviews were conducted from November-December 2020, with findings reported using descriptive statistics and thematic analysis, respectively.

Results: Findings from 303 survey responses and 20 interviews were analyzed. Most participants indicated their vision loss negatively impacts their ability to conduct daily activities (eg, self care, driving) and leads to constant worry, loneliness, and/or isolation. Participants frequently reported requiring caregiver support, often for eye appointment travel or everyday tasks. Regardless of AMD type, participants reported having several appointments each year, and that time spent travelling to/from and waiting at appointments and related costs were considerable. Although participants receiving anti-vascular endothelial growth factor injections valued treatment, the experience added additional burden related to anxiety, fear, pain, and even greater reliance on caregivers. Many participants indicated they felt poorly informed about their disease and treatment options, particularly at diagnosis, which increased their emotional burden.

Conclusion: Patients with AMD living in Canada experience a significant and persistent mental, physical, and financial burden as a direct result of their disease. Improvements to provision of disease-related information, support of daily activities and appointment attendance, and the overall treatment experience could substantially enhance outcomes among the growing population of patients with AMD.