Understanding the patient's lived experience of neovascular age-related macular degeneration: a qualitative study

Purpose In industrialised populations age-related macular degeneration (ARMD) is the leading cause of visual disability of the elderly. Successful new treatment with anti-endothelial growth factors for neovascular-classified ARMD has led to a divergence in treatment and experiences of people ARMD. This study aimed to understand the participant's experience of neovascular ARMD, including ongoing treatment with anti-vascular endothelial growth factor. Methods Twenty-five participants from one clinical site were qualitatively interviewed to elicit their experiences of treatment for neovascular ARMD. Results Two major themes were identified. A life negotiated by neovascular ARMD captures the participants' experience of living with the condition and treatment regime for neovascular ARMD. The second major theme: Uncertainty displayed their appraisal of life, treatment and their perceived future. Conclusions Anxieties concerning the injections, new limitations to lifestyles, and an uncertain future all emerged from the data analysis. However, thankfulness for the treatment, the importance of familiar patterns in treatments and recovery and a guarded optimism also emerged. Knowledge of the experiences, anxieties and concerns of this patient population can be used to inform clinical practice and lead to patient-centred care.