Experiences of patients and caregivers on the caregiving in macular degeneration

Duration: Apr - Nov 2020

A recently published screening report from the National Health Care Institute shows that there is room for further improvement within the care process for age-related macular degeneration. The NHG standard and the multidisciplinary guideline of the Nederlands Oogheelkundig Gezelschap (NOG) provide recommendations for this care process. In practice, however, not all of these seem to be followed unambiguously, which may lead to variation in practice.

To provide insight into where care for patients with macular degeneration can be further improved. This mainly concerns communication and information provision during the care process about:
- joint decision-making in treatment and diagnosis
- nutrition and prevention
- prognosis and future perspective
- rehabilitation support and aids

We discuss the experiences from two perspectives, that of the patients themselves and that of various healthcare providers involved. This is a qualitative study consisting of interviews with patients with age-related macular degeneration and care providers who work within the care ginving tot patient with in macular degeneration.

The results are processed in both a Dutch report and an English scientific article. In addition, the National Health Care Institute will record the findings in a so-called 'Improvement Report', which will be presented to the Ministry of Health, Welfare and Sport.
Zorginstituut Nederland
In this project we work together with
Amsterdam UMC