Drivers of and Barriers to Adherence to Neovascular Age-Related Macular Degeneration and Diabetic Macular Edema Treatment Management Plans: A Multi-National Qualitative Study

Abstract

Purpose Neovascular age-related macular degeneration (nAMD) and diabetic macular edema (DME) patients treated with intravitreally injected anti-vascular endothelial growth factor (anti-VEGF) monotherapies achieve lower vision improvements compared with patients in clinical trials. This qualitative research study aimed to better understand the real-world anti-VEGF treatment experience from nAMD and DME patients’, caregivers’, and retina specialists’ perspectives. Methods One-time, semi-structured, individual interviews were conducted with adult patients with nAMD or DME treated with anti-VEGF injections for ≥12 months, their caregivers, and experienced retina specialists. Interview transcripts were analyzed qualitatively using a thematic analysis approach. Results A total of 49 nAMD and 46 DME patients, 47 nAMD and 33 DME caregivers, and 62 retina specialists were interviewed in the USA, Canada, France, Germany, Italy and Spain. Most (79%) patients and caregivers reported disruptions to their routine on the day before, the day of, or the day after anti-VEGF injection. Seven nAMD patients (14%) and 14 DME patients (30%) reported having missed an injection visit. The most frequently reported driver for adherence for patients was the doctor–patient relationship (n=66, 70%), whereas for caregivers, it was the ease of booking an appointment (n=25, 32%). Retina specialists reported patient education on the treatment (n=28, 45%) as the most important driver. Treatment barriers could be grouped into four categories: tolerability, clinical factors, logistical parameters and human factors. The most frequently reported barrier to adherence for patients and caregivers was related to side effects (pain/discomfort/irritation: n=63, 67% of patients; n=52, 66% of caregivers), whereas for retina specialists it was logistical parameters (travel logistics: n=44, 71%). Conclusion This study highlights the importance of the doctor–patient relationship and patient education as key drivers, and treatment tolerability and logistics as key barriers to treatment adherence. Improved doctor–patient relationship/communication and patient education together with new therapies offering convenience, long-acting effectiveness, and better tolerability may improve treatment adherence.

Effective health communication for age‐related macular degeneration: An exploratory qualitative study

“…41 Likewise, due attention to the importance and urgency for action (concept 1B), comprehensiveness (concept 1C) and habit formation (concept 1D) could be conducive to patient adherence, a pressing issue in AMD care. 42 According to the results of this study, relevance (concepts 2A-2D) is another worthwhile consideration when contemplating future innovations in education materials for AMD. Relevance is context-specific according to individual patient circumstances, such as different learning styles (concept 2A) and different disease stages (concept 2B); contrasting with quality, which applies across all contexts.…”

“…Realism and accuracy ensure that patients do not misinterpret information and remain compliant with their management, particularly for patients who require multiple anti‐VEGF injections to be received within a certain time frame 41 . Likewise, due attention to the importance and urgency for action (concept 1B), comprehensiveness (concept 1C) and habit formation (concept 1D) could be conducive to patient adherence, a pressing issue in AMD care 42 …”

Exploring challenges to nutrition intervention adherence using COM-B model among patients with wet age-related macular degeneration: a qualitative study

“…In the subtheme of ‘social opportunity’, stigma was identified as a barrier to intervention compliance, which was scarcely reported as a factor in previous studies 24 39. Stigma is the main obstacle to the social well-being of older adults with vision impairment 40.…”

“…However, the long-term nature of the intervention and the fear of complications led to delayed treatment or cessation of the intervention shortly after initiation, which is consistent with the findings of Giocanti. 39 Moreover, patients expressed the need for professional support, such as monitoring and being reminded of the diet via telephone.…”

“…38 In the subtheme of 'social opportunity', stigma was identified as a barrier to intervention compliance, which was scarcely reported as a factor in previous studies. 24 39 Stigma is the main obstacle to the social well-being of older adults with vision impairment. 40 These individuals often find it difficult to talk about their concerns with friends because they are afraid of being treated as blind people, of being looked at differently, of being rejected and even of receiving unfair treatment, all of which will lead to negative feelings.…”