Abstract
Purpose :
Previous research has shown that inadequate communication between clinicians and patients is one of the factors for poor patient activation and higher mental health issues. Individuals living with Age-Related Macular Degeneration (AMD) have higher prevalence of mental health disorders and low patient activation. The purpose of this project was to evaluate the current clinician-patient communication in AMD to inform the development of evidence-based communication guidelines.
Methods :
A taskforce comprised of representatives from patient advocacy organizations in the USA, Germany, and Bulgaria was established. Two separate interview questionnaires were created by the task force (one each for the patients and clinicians) to understand the current communication challenges experienced by patients and clinicians. Patient interviews focused on their self-evaluated understanding of AMD, their sources of information, preferred content, and format. The clinician interviews concentrated on the effectiveness of their communication, their role in enhancing patient comprehension, and the resources required for improved management of the disease. Patients and clinicians were invited to participate via invitations sent through the patient advocacy organizations. Interviews were conducted online.
Results :
Patients rated their AMD knowledge as moderate but felt clinicians provided inadequate information on disease management and rehabilitation services. Retinal specialists were considered the most reliable information source, though patient organizations also were considered valuable. Patients preferred verbal communication and seminars allowing interaction with clinicians and peers. Specifically, patients wanted more information on required examinations and medications, behavioural instructions, and disease prognosis. Clinicians reported that limited appointment times prevented detailed communication about prognosis, especially for geographic atrophy. Clinicians also reported that they rarely provide information on support resources like rehabilitation services, support groups, and social care.
Conclusions :
This project yielded valuable insights into clinician-patient communication regarding AMD care. Based on these insights the taskforce formulated a series of practical and impactful recommendations which are relevant for clinicians as well as policymakers.
This abstract was presented at the 2024 ARVO Annual Meeting, held in Seattle, WA, May 5-9, 2024.