’I had no idea what could come’- health care support for AMD in Germany- The patients’ view

Background Due to the demographic change visual impairment and blindness in the elderly caused by chronic eye diseases become major public health themes. Age- related macular degeneration (AMD) is one of the most common causes of visual impairment and blindness in older adults above 60 years of age in the western countries, followed by glaucoma and diabetic retinopathy. Objectives: The purpose of this study is to find out how patients with AMD assess their medical care, tool-based and psychosocial counseling services in Germany. Methods Data was collected by using narrative, semi-structured interviews. A purposive sampling strategy was used to sample the study population with patients with AMD, which is characterized by a variety of different life experiences of the patients. The data analysis followed the principles of grounded theory. Results The interviewed AMD patients were between 72 and 87 years old. Before the patients were diagnosed with AMD, AMD was not known to them and suffering from an unrecoverable disease resulting in blindness, made many of the patients anxious. Patients with AMD complained about missing information about the AMD and its treatment. Tool-related and psychosocial counseling services and their benefits were unknown to most of the patients. Therapy with Anti-VEGF injections gives hope to many patients with neovascular AMD, but at the same time it is associated with a time, psychological and physical strain. The time spent in clinics and practices, the waiting for appointments, the number of examinations and injections, communication problems with the medical staff, information deficits, the injections themselves and their side effects were often severe and nerve-wracking for the elderly. Conclusions New strategies need to be developed to facilitate access to AMD information for patients with AMD, as well as to reduce the time required for medical treatment, e.g. waiting times in clinics and practices. Key messages Therapy with Anti-VEGF injections gives hope to many patients with neovascular AMD, but at the same time it is associated with a time, psychological and physical strain. Patients with AMD complained about missing information about the AMD and its treatment.