Improving Clinical Management of Diabetic Macular Edema: Insights from a Global Survey of Patients, Healthcare Providers, and Clinic Staff

Abstract 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 cli...

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Main Authors: Focke Ziemssen, Michelle Sylvanowicz, Winfried M. Amoaku, Tariq Aslam, Bora Eldem, Robert P. Finger, Richard P. Gale, Laurent Kodjikian, Jean-François Korobelnik, Xiaofeng Lin, Anat Loewenstein, Paul Mitchell, Moira Murphy, David R. Owens, Nick Parker, Ian Pearce, Francisco J. Rodríguez, Jude Stern, S. James Talks, David T. Wong, Tien Yin Wong, Jane Barratt
Format: Article
Language:English
Published: Adis, Springer Healthcare 2024-12-01
Series:Ophthalmology and Therapy
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Online Access:https://doi.org/10.1007/s40123-024-01060-4
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author Focke Ziemssen
Michelle Sylvanowicz
Winfried M. Amoaku
Tariq Aslam
Bora Eldem
Robert P. Finger
Richard P. Gale
Laurent Kodjikian
Jean-François Korobelnik
Xiaofeng Lin
Anat Loewenstein
Paul Mitchell
Moira Murphy
David R. Owens
Nick Parker
Ian Pearce
Francisco J. Rodríguez
Jude Stern
S. James Talks
David T. Wong
Tien Yin Wong
Jane Barratt
author_facet Focke Ziemssen
Michelle Sylvanowicz
Winfried M. Amoaku
Tariq Aslam
Bora Eldem
Robert P. Finger
Richard P. Gale
Laurent Kodjikian
Jean-François Korobelnik
Xiaofeng Lin
Anat Loewenstein
Paul Mitchell
Moira Murphy
David R. Owens
Nick Parker
Ian Pearce
Francisco J. Rodríguez
Jude Stern
S. James Talks
David T. Wong
Tien Yin Wong
Jane Barratt
author_sort Focke Ziemssen
collection DOAJ
description Abstract 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.
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spelling doaj-art-ecb4bbbfab374f1d998f22ce88dfea492025-08-20T02:40:36ZengAdis, Springer HealthcareOphthalmology and Therapy2193-82452193-65282024-12-0114122924610.1007/s40123-024-01060-4Improving Clinical Management of Diabetic Macular Edema: Insights from a Global Survey of Patients, Healthcare Providers, and Clinic StaffFocke Ziemssen0Michelle Sylvanowicz1Winfried M. Amoaku2Tariq Aslam3Bora Eldem4Robert P. Finger5Richard P. Gale6Laurent Kodjikian7Jean-François Korobelnik8Xiaofeng Lin9Anat Loewenstein10Paul Mitchell11Moira Murphy12David R. Owens13Nick Parker14Ian Pearce15Francisco J. Rodríguez16Jude Stern17S. James Talks18David T. Wong19Tien Yin Wong20Jane Barratt21University Eye Clinic, Department of Ophthalmology, University Hospital Leipzig, University of LeipzigBayer Consumer Care AGQueen’s Medical CentreManchester Royal Eye Hospital, NHS Central Manchester University Hospitals and University of ManchesterDepartment of Ophthalmology, Hacettepe UniversityDepartment of Ophthalmology, University Medical Centre Mannheim, University of HeidelbergYork and Scarborough Teaching Hospital NHS Foundation TrustService d’Ophtalmologie, Hôpital Universitaire de La Croix-RousseService d’Ophtalmologie, CHU BordeauxGuangdong Provincial Key Laboratory of Ophthalmology and Visual Science, Zhongshan Ophthalmic Center, Sun Yat-sen UniversityDepartment of Ophthalmology, Faculty of Medicine, Tel Aviv Medical Center, Tel Aviv UniversityUniversity of Sydney (Westmead Institute for Medical Research)Exploristics LtdSwansea University Medical SchoolThe International Agency for the Prevention of BlindnessRoyal Liverpool University HospitalFundación Oftalmologia Nacional, Escuela de Medicina y Ciencias de la Salud, Universidad del RosarioThe International Agency for the Prevention of BlindnessThe Newcastle Upon Tyne Hospitals NHS FoundationDepartment of Ophthalmology and Vision Sciences, St. Michael’s Hospital, University of Toronto and Unity Health TorontoTsinghua Medicine, School of Clinical Medicine, Beijing, China and Singapore Eye Research Institute, Singapore National Eye CenterInternational Federation on AgeingAbstract 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.https://doi.org/10.1007/s40123-024-01060-4DiabetesMacular edemaPatient experienceVisual outcomes
spellingShingle Focke Ziemssen
Michelle Sylvanowicz
Winfried M. Amoaku
Tariq Aslam
Bora Eldem
Robert P. Finger
Richard P. Gale
Laurent Kodjikian
Jean-François Korobelnik
Xiaofeng Lin
Anat Loewenstein
Paul Mitchell
Moira Murphy
David R. Owens
Nick Parker
Ian Pearce
Francisco J. Rodríguez
Jude Stern
S. James Talks
David T. Wong
Tien Yin Wong
Jane Barratt
Improving Clinical Management of Diabetic Macular Edema: Insights from a Global Survey of Patients, Healthcare Providers, and Clinic Staff
Ophthalmology and Therapy
Diabetes
Macular edema
Patient experience
Visual outcomes
title Improving Clinical Management of Diabetic Macular Edema: Insights from a Global Survey of Patients, Healthcare Providers, and Clinic Staff
title_full Improving Clinical Management of Diabetic Macular Edema: Insights from a Global Survey of Patients, Healthcare Providers, and Clinic Staff
title_fullStr Improving Clinical Management of Diabetic Macular Edema: Insights from a Global Survey of Patients, Healthcare Providers, and Clinic Staff
title_full_unstemmed Improving Clinical Management of Diabetic Macular Edema: Insights from a Global Survey of Patients, Healthcare Providers, and Clinic Staff
title_short Improving Clinical Management of Diabetic Macular Edema: Insights from a Global Survey of Patients, Healthcare Providers, and Clinic Staff
title_sort improving clinical management of diabetic macular edema insights from a global survey of patients healthcare providers and clinic staff
topic Diabetes
Macular edema
Patient experience
Visual outcomes
url https://doi.org/10.1007/s40123-024-01060-4
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