Global Insights from Patients, Providers, and Staff on Challenges and Solutions in Managing Neovascular Age-Related Macular Degeneration

Anat Loewenstein; Michelle Sylvanowicz; Winfried M Amoaku; Tariq Aslam; Chui Ming Gemmy Cheung; Bora Eldem; Robert P Finger; Richard P Gale; Laurent Kodjikian; Adrian Koh; Jean-François Korobelnik; Xiaofeng Lin; Paul Mitchell; Moira Murphy; Mali Okada; Ian Pearce; Francisco J Rodriguez; Jude Stern; S James Talks; David T Wong; Tien Yin Wong; Focke Ziemssen; Jane Barratt

doi:10.1007/s40123-024-01061-3

Global Insights from Patients, Providers, and Staff on Challenges and Solutions in Managing Neovascular Age-Related Macular Degeneration

Ophthalmol Ther. 2024 Dec 14. doi: 10.1007/s40123-024-01061-3. Online ahead of print.

Authors

Anat Loewenstein¹, Michelle Sylvanowicz², Winfried M Amoaku³, Tariq Aslam⁴, Chui Ming Gemmy Cheung^{5

6}, Bora Eldem⁷, Robert P Finger⁸, Richard P Gale⁹, Laurent Kodjikian^{10

11}, Adrian Koh¹², Jean-François Korobelnik^{13

14}, Xiaofeng Lin¹⁵, Paul Mitchell¹⁶, Moira Murphy¹⁷, Mali Okada¹⁸, Ian Pearce¹⁹, Francisco J Rodriguez²⁰, Jude Stern²¹, S James Talks²², David T Wong²³, Tien Yin Wong^{6

24}, Focke Ziemssen^{25

26}, Jane Barratt²⁷

Affiliations

¹ Department of Ophthalmology, Tel Aviv Medical Center, Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel. [email protected].
² Bayer Consumer Care AG, Basel, Switzerland.
³ University of Nottingham and Queen's Medical Centre, Nottingham, UK.
⁴ Manchester Royal Eye Hospital, NHS Central Manchester University Hospitals and University of Manchester, Manchester, UK.
⁵ Duke-NUS Medical School, National University of Singapore, Singapore, Singapore.
⁶ Singapore Eye Research Institute (SERI), Singapore, Singapore.
⁷ Department of Ophthalmology, Hacettepe University, Ankara, Turkey.
⁸ Department of Ophthalmology, University Medical Centre Mannheim, University of Heidelberg, Mannheim, Germany.
⁹ York and Scarborough Teaching Hospital NHS Foundation Trust, York, UK.
¹⁰ Croix-Rousse University Hospital, University of Lyon, Lyon, France.
¹¹ UMR-CNRS, Villeurbanne, Lyon, France.
¹² Eye and Retina Surgeons, Camden Medical Centre, Singapore, Singapore.
¹³ Service d'Ophtalmologie, CHU Bordeaux, Bordeaux, France.
¹⁴ BPH, Universitaire Bordeaux, INSERM, 33000, Bordeaux, France.
¹⁵ Zhongshan Ophthalmic Center, Guangdong Provincial Key Laboratory of Ophthalmology and Visual Science, Sun Yat-sen University, Guangzhou, China.
¹⁶ University of Sydney (Westmead Institute for Medical Research), Sydney, NSW, Australia.
¹⁷ Exploristics Ltd, Belfast, Northern Ireland, UK.
¹⁸ Royal Victorian Eye and Ear Hospital, East Melbourne, VIC, Australia.
¹⁹ Royal Liverpool University Hospital, Liverpool, UK.
²⁰ Fundación Oftalmologia Nacional, Escuela de Medicina y Ciencias de la Salud, Universidad del Rosario, Bogotá, Colombia.
²¹ The International Agency for the Prevention of Blindness, Sydney, Australia.
²² The Newcastle Upon Tyne Hospitals NHS Foundation, Newcastle Upon Tyne, UK.
²³ Department of Ophthalmology and Vision Sciences, University of Toronto, Unity Health Toronto, St. Michael's Hospital, Toronto, ON, Canada.
²⁴ Tsinghua Medicine, Tsinghua University, Beijing, China.
²⁵ Department of Ophthalmology, University Hospital Leipzig, Leipzig, Germany.
²⁶ Centre for Ophthalmology Eberhard, Karl University of Tübingen, Tübingen, Germany.
²⁷ International Federation on Ageing, Toronto, ON, Canada.

PMID: 39673040
DOI: 10.1007/s40123-024-01061-3

Abstract

Introduction: Neovascular age-related macular degeneration is a global public-health concern, associated with a considerable burden to individuals, healthcare systems, and society. The objective of this study was to understand different perspectives on the challenges associated with the clinical management of neovascular age-related macular degeneration, which could elucidate measures to comprehensively improve clinical care and outcomes.

Methods: A survey was carried out of patients with neovascular age-related macular degeneration, their providers, and clinic staff in 77 clinics across 24 countries on six continents, from a diverse range of healthcare systems, settings, and reimbursement models. Surveys comprised a series of single/multiple-response questions completed anonymously. Data gathered included patient personal characteristics, appointment attendance challenges, treatment experiences, and opportunities to improve support. Provider and clinic staff surveys asked similar questions about their perspectives; clinic characteristics were also captured.

Results: There were 6425 responses; 4558 patients with neovascular age-related macular degeneration, 659 providers, and 1208 clinic staff. Challenges identified included concern about patient burden to family/friends, high frequency of treatment, difficulties in traveling to appointments, long waiting times, and insufficient comprehension of neovascular age-related macular degeneration. Participants identified logistical (improved financial assistance with treatment and out-of-pocket costs, and appointment reminders), operational (addressing clinic set up to reduce waiting times and improving the amount of time providers spend with patients), and educational (improving quality and provision of patient information and expectation-setting) opportunities to improve care.

Conclusions: The wealth of data generated by this global survey highlights the breadth of challenges associated with clinical management of patients with neovascular age-related macular degeneration. Addressing the opportunities raised could improve patient adherence to treatment and potentially outcomes, reduce appointment burden, and increase clinic capacity.

Keywords: Neovascular age-related macular degeneration; Patient experience; nAMD.