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Lookup NU author(s): James Talks
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© The Author(s) 2024.Introduction: In contrast with patients receiving therapy for retinal disease during clinical trials, those treated in routine clinical practice experience various challenges (including administrative, clinic, social, and patient-related factors) that can often result in high patient and clinic burden, and contribute to suboptimal visual outcomes. The objective of this study was to understand the challenges associated with clinical management of diabetic macular edema from the perspectives of patients, healthcare providers, and clinic staff, and identify opportunities to improve eye care for people with diabetes. Methods: We conducted a survey of patients with diabetic macular edema, providers, and clinic staff in 78 clinics across 24 countries on six continents, representing a diverse range of individuals, healthcare systems, settings, and reimbursement models. Surveys comprised a series of single- and multiple-response questions completed anonymously. Data gathered included patient personal characteristics, challenges with appointment attendance, treatment experiences, and opportunities to improve support. Provider and clinic staff surveys asked similar questions about their perspectives; and clinic characteristics were also captured. Results: Overall, 5681 surveys were gathered: 3752 from patients with diabetic macular edema, 680 from providers, and 1249 from clinic staff. Too many appointments, too short treatment intervals, difficulties in traveling to the clinic or arranging adequate support to travel, out-of-pocket costs, office/parking fees, and long waiting times were noted by all as contributing to increase the burden on the patient and caregiver. Patients generally desired more in-depth discussions with their provider, which would help with information exchange and better expectation-setting. Conclusions: The wealth of systematic data generated by this global survey highlights the breadth and scale of challenges associated with the clinical management of patients with diabetic macular edema. Addressing the opportunities for improvement raised by patients, providers, and clinic staff could increase patient adherence to treatment, reduce appointment burden, and improve clinic capacity.
Author(s): Ziemssen F, Sylvanowicz M, Amoaku WM, Aslam T, Eldem B, Finger RP, Gale RP, Kodjikian L, Korobelnik J-F, Lin X, Loewenstein A, Mitchell P, Murphy M, Owens DR, Parker N, Pearce I, Rodriguez FJ, Stern J, Talks SJ, Wong DT, Wong TY, Barratt J
Publication type: Article
Publication status: Published
Journal: Ophthalmology and Therapy
Year: 2024
Pages: epub ahead of print
Online publication date: 14/12/2024
Acceptance date: 23/08/2024
Date deposited: 08/01/2025
ISSN (print): 2193-8245
ISSN (electronic): 2193-6528
Publisher: Adis
URL: https://doi.org/10.1007/s40123-024-01060-4
DOI: 10.1007/s40123-024-01060-4
Data Access Statement: Focke Ziemssen, Michelle Sylvanowicz, Anat Loewenstein, Moira Murphy, and Jane Barratt had full access to all data in this study and take responsibility for the integrity of the data and data analysis. This study used anonymized patient, provider, and clinic staff data that are not publicly available due to confidentiality considerations. For further information, please contact the corresponding author.
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