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患者、医护人员及工作人员对新生血管性年龄相关性黄斑变性管理挑战与解决方案的全球见解

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

作者信息

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

机构信息

Department of Ophthalmology, Tel Aviv Medical Center, Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel.

Bayer Consumer Care AG, Basel, Switzerland.

出版信息

Ophthalmol Ther. 2025 Jan;14(1):211-228. doi: 10.1007/s40123-024-01061-3. Epub 2024 Dec 14.

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.

摘要

引言

新生血管性年龄相关性黄斑变性是一个全球公共卫生问题,给个人、医疗系统和社会带来了相当大的负担。本研究的目的是了解与新生血管性年龄相关性黄斑变性临床管理相关挑战的不同观点,这有助于阐明全面改善临床护理和治疗结果的措施。

方法

对来自六大洲24个国家的77家诊所的新生血管性年龄相关性黄斑变性患者、其医疗服务提供者和诊所工作人员进行了一项调查,这些诊所具有不同的医疗系统、环境和报销模式。调查包括一系列匿名完成的单项/多项选择题。收集的数据包括患者个人特征、就诊预约面临的挑战、治疗经历以及改善支持的机会。医疗服务提供者和诊所工作人员的调查询问了他们对类似问题的看法;还收集了诊所的特征信息。

结果

共收到6425份回复;其中4558名新生血管性年龄相关性黄斑变性患者、659名医疗服务提供者和1208名诊所工作人员。确定的挑战包括对患者给家人/朋友带来负担的担忧、治疗频率高、就诊路途困难、等待时间长以及对新生血管性年龄相关性黄斑变性的理解不足。参与者确定了后勤方面(改善治疗和自付费用的经济援助以及预约提醒)、运营方面(调整诊所设置以减少等待时间并增加医疗服务提供者与患者相处的时间)和教育方面(提高患者信息的质量和提供以及设定预期)改善护理的机会。

结论

这项全球调查产生的大量数据凸显了与新生血管性年龄相关性黄斑变性患者临床管理相关挑战的广度。解决所提出的机会问题可以提高患者对治疗的依从性并可能改善治疗结果,减轻就诊负担,并提高诊所的服务能力。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6f67/11724828/88c666eeb8f8/40123_2024_1061_Fig1_HTML.jpg

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