Effective health communication for age-related macular degeneration: An exploratory qualitative study

Abstract

Purpose: Age-related macular degeneration (AMD) is a major cause of vision loss globally. Patients with AMD may not always understand or retain the information about AMD communicated by their eyecare practitioner. This study aims to explore the characteristics of effective health communication for AMD, from both patients' and eyecare practitioners' perspectives. The purpose is to provide a foundation for understanding how health communication for AMD could potentially be improved in the future. Methods: A total of 10 focus groups involving 17 patients with AMD and 17 optometrists were conducted via web conferencing. Each session was audio-recorded, transcribed and analysed using the Grounded Theory Methodology. Results: The five themes identified are as follows: (1) materials' quality, (2) materials' relevance, (3) contextualising for the individual, (4) contextualising for the disease and (5) support network. Participants expressed concern about the unrealistic yet common depiction of vision loss in AMD as a black patch overlying common visual scenes. They also preferred education materials tailored to a specific disease stage and the regular opportunity to ask or answer questions. Longer appointment durations and peer support (from family, friends or others with AMD) were also valued. Conclusion: Optometrists are encouraged to focus on three over-arching dimensions when counselling patients with AMD in routine clinical practice: (1) curating and using disease and stage-specific, impactful education materials, (2) their chairside verbal communication techniques and (3) AMD-specific opportunities for care coordination among patient family and friends, peers and other multidisciplinary members of the care support team.