Research & Innovation

Improving Communication in AMD Care

Building on its 2022 study into the socioeconomic impact of late-stage AMD in Bulgaria, Germany and the United States, Retina International established a Communications Taskforce bringing together patients, caregivers and healthcare professionals. The taskforce explored ways to improve communication and ensure people living with AMD have access to clear, consistent information about their condition, care and available support.

The resulting recommendations aim to strengthen patient education, support shared decision-making and help people living with AMD feel more informed and empowered throughout their care journey.

Why Communication Matters

AMD can affect central vision and make everyday activities such as reading, driving and recognising faces more difficult. The impact can extend beyond vision loss, affecting independence, emotional wellbeing, employment and family life.

RI’s earlier socioeconomic study highlighted the mental health challenges experienced by people living with advanced AMD and their caregivers. It also identified differences in patient activation — the knowledge, confidence and ability people have to manage their own healthcare — across the three countries studied.

These findings prompted RI to explore how communication between healthcare professionals and patients could be improved.

a woman assisting a man holding a while cane

Taskforce

What did the taskforce explore?

The taskforce gathered insights from patients, caregivers and healthcare professionals in Bulgaria, Germany and the United States through interviews and background research.

The discussions focused on:

How well patients understand AMD, its stages and progression.

How educational resources can be clear, consistent and adapted to different countries and healthcare systems

How healthcare professionals can improve communication about treatment, rehabilitation and support services.

The most useful formats for delivering patient education.

The information patients and caregivers need to manage the condition.

Key findings

What were the taskforce key findings?

Patients want more comprehensive information.

Patient representatives generally felt they had enough knowledge to manage their condition, but reported that the information provided during clinical appointments was often insufficient. They wanted clearer guidance about examinations, treatment, disease progression, daily living and rehabilitation.

Healthcare professionals face time constraints.

The interviews highlighted that limited appointment time can make it difficult for clinicians to explain the condition and its management in detail. Information about low-vision aids, rehabilitation and wider support services was often overlooked.

Patient organisations play an important role.

Organisations such as Foundation Fighting Blindness in the United States and PRO RETINA Germany were identified as valuable sources of targeted information, education and opportunities to connect with other people affected by AMD.

Patients value accessible, varied forms of communication.

Participants highlighted the value of direct conversations with healthcare professionals, educational seminars, videos and written materials. Digital resources and peer-to-peer learning may also help patients access information and support.

Information needs to be consistent but locally relevant.

Educational resources should use clear, accessible language and be reviewed by patient organisations and relevant clinical societies. While core information about AMD should be consistent, treatment options, rehabilitation services and available support need to reflect each country’s healthcare system.

Recommendations

Recommendations for improving AMD communication

Based on the interviews and discussions, the taskforce identified several ways to improve patient education and communication.

Develop accessible educational resources

Create clear, evidence-based materials explaining AMD, disease progression, management and what patients can expect.

Strengthen peer support

Help patients connect with others through patient organisations, support groups and educational events.

Improve digital inclusion

Explore initiatives such as “digital angels”, where digitally trained older people help their peers access online information and resources.

Include rehabilitation and support

Make information about low-vision services, rehabilitation, assistive aids and social support a more consistent part of patient care.

Support shared decision-making

Ensure patients receive realistic, understandable information about their condition and care options, with caregivers involved where appropriate and with the patient’s agreement.

Promote consistent, locally relevant information

Encourage collaboration between patient organisations and clinical societies to review educational materials, using accessible language and adapting information to national healthcare systems.

Address emotional wellbeing

Recognise the psychological impact of AMD and provide appropriate information, guidance and signposting to support services.

Evaluate communication

Gather feedback from patients and caregivers to better understand whether information provided by healthcare professionals meets their needs.

Limitations

The taskforce’s findings were based on a limited number of interviews in three countries. They provide valuable insights into patient and healthcare professional experiences but may not represent the wider AMD community. The report recommends larger studies involving more patients and healthcare professionals to build a broader understanding of communication needs.