If A Pamphlet Is Not Enough! How To Ensure That Patients With Amd Receive The Necessary And Correct Information

Wet AMD is an eye disease that typically affects older individuals and can be treated to slow the progression of vision loss. However, in the clinic, it is often observed that patients still have many questions despite a lengthy treatment process. This indicates a need to rethink how information is provided to patients.

Over a period of eight treatment days, 232 questions were recorded from 100 patients and 11 relatives. This highlighted the need for additional information, leading to the creation of an AMD Café. The café offers oral and visual presentations based on nine categories, with presentations from different professional groups. 

Mixed methods were used for data collection, combining both qualitative and quantitative approaches. A questionnaire was distributed to patients and relatives at the start of the event and collected again at the end. Five patients were randomly selected for interviews, having agreed to participate via the questionnaire. The interviews were conducted using a semi-structured interview guide. Data from the interviews were transcribed and analyzed using an abductive method. 

Overall, there was a very high level of satisfaction with the event among the participating patients and relatives. The questionnaire had a response rate of 95%. Before the event, 57.5% of respondents rated their knowledge of wet AMD as little or none, which dropped to 12.5% after the event. Conversely, 10% rated their knowledge as high before the event, which increased to 62.5% afterwards. 

The analysis of the interviews revealed five main themes: "When a pamphlet is not enough," "Multiple perspectives with interprofessional presentations," "Increased knowledge and involvement of relatives," "Nice to meet others in the same situation," and "Dealing with the feeling of loss." 

Conclusion: Our study shows that patients and relatives have increased their knowledge of wet AMD by participating in the AMD Café. Additionally, it is significant for patients that their relatives gain a better understanding of what it is like to live with AMD.