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

Audrey Giocanti-Aurégan; Alfredo García-Layana; Tunde Peto; Brittany Gentile; Gloria C Chi; Mirela Mirt; Charlotte E Kosmas; Jeremy Lambert; Sally Lanar; Hannah B Lewis; Nancy M Holekamp

doi:10.2147/PPA.S347713

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

Patient Prefer Adherence. 2022 Mar 3:16:587-604. doi: 10.2147/PPA.S347713. eCollection 2022.

Authors

Affiliations

¹ Ophthalmology Department, Avicenne Hospital, Bobigny, France.
² Clínica Universidad de Navarra, University of Navarra, Pamplona, 31009, Spain.
³ Queen's University Belfast, Belfast, UK.
⁴ Genentech, South San Francisco, CA, USA.
⁵ F. Hoffmann-La Roche, Basel, Switzerland.
⁶ Patient Centred Outcomes, ICON Plc, Reading, UK.
⁷ Patient Centred Outcomes, ICON Plc, Lyon, France.
⁸ Pepose Vision Institute, Chesterfield, MO, USA.

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.

Keywords: adherence; diabetic macular edema; neovascular age-related macular degeneration; qualitative interviews; treatment experience.

Grants and funding

F. Hoffmann-La Roche Ltd., Basel, Switzerland, provided financial support for the study, which was conducted by ICON plc, and participated in the review and approval of the manuscript. Funding was provided by F. Hoffmann-La Roche Ltd. for third-party writing assistance, which was provided by Andrea de Palma BSc, MSc, of ICON plc, and Sandra Boswell PhD, and Anne Nunn, PhD, CMPP, of Envision Pharma Group.