Emotional and physical experiences of people with neovascular age-related macular degeneration during the injection process in Germany: a qualitative study

Abstract

ObjectivesIn order to better understand the continued barriers to the provision of vascular endothelial inhibitor therapy, this study aims to investigate patients’ experiences with neovascular age-related macular degeneration (nvAMD) in Germany during the injection process and how they deal with it.Design and participantsThis analysis is part of the qualitative arm of a wider mixed-methods study. We recruited participants all over Germany via ophthalmologists, eye clinics, general practitioners, care bases and support groups between June 2018 and December 2020 and selected a subsample of study participants with nvAMD who were either undergoing or had previously undergone vascular endothelial growth factor inhibitor therapy. We conducted narrative, semistructured, face-to-face interviews at the participants’ homes, which were audio-recorded. The interviews were thematically analysed.ResultsTwenty-two participants were included in this analysis. Experiencing neovascular macular degeneration was dominated by the injection experience. Study participants perceived the treatment with vascular endothelial inhibitor injections as uncomfortable, and they described undergoing varying levels of anxiety during the whole injection process. After some years of receiving multiple injections, the pain and not experiencing any positive effects made participants with significant vision loss want to discontinue therapy. Furthermore, they narrated negative injection experiences in association with their interactions with medical staff and doctors.ConclusionAlthough time in the medical setting is limited, efficient and good doctor-patient relationships seem crucial for satisfying care experiences. A respectful and humane relationship may be one key to achieving treatment adherence.

Patient perspectives and barriers in the treatment of neovascular age-related macular degeneration in Denmark: a qualitative study

“…Our study revealed a highly adherent patient group who did not consider opting out of treatment because they find the course of treatment somehow unproblematic and without significant barriers. In contrast, a recent study by Thier et al 17 with nAMD patients in Germany found that the pain associated with therapy and a lack of perceived positive effects led individuals with significant vision loss to discontinue treatment. Effective communication strategies were identified as crucial in preventing patients from discontinuing therapy, a recommendation echoed in the work of Hüsler and Schmid 18 from Switzerland.…”

Piloting a forced-choice task to elicit treatment preferences in geographic atrophy

“…Indeed, these three main factors (frequency, efficacy, side effects) are central to DCE studies carried out in the context of wet AMD injections ( 16 – 18 ). Some additional factors, such as waiting time in clinic and the pain or discomfort associated with injections, are also known to be burdensome for patients undergoing regular intravitreal treatment for wet AMD ( 19 ). We included waiting time in the scenario options because this was an important concern for the patient advisors; however, this was held constant across options, on the basis that the actual injection procedure and time in clinic would be similar whatever the treatment regimen.…”

Pain related to intravitreal injections for age-related macular degeneration: a qualitative study of the perspectives of patients and practitioners

“…The importance of patient–practitioner interaction has been highlighted in qualitative studies of the experience of patients with neovascular AMD5 23–26; however, there is a paucity of literature describing qualitative perspectives in the assessment of pain and anxiety related to anti-VEGF injections that incorporate a practitioner perspective. This study examined patients’ experiences of injections and combined them with the practitioners’ views from a qualitative perspective.…”