让利益相关者参与制定干眼症和 MGD PCORI 资助研究的路线图

IF 1.8 Q3 HEALTH CARE SCIENCES & SERVICES Patient Related Outcome Measures Pub Date : 2024-05-01 DOI:10.2147/PROM.S438290
Natalia Warren, Steven L Maskin, V. Gurupur, Deidre Rector, Diana Adelman, Susan Howell, John McAree, Ruthie Dibble, Celia Carlisano, David Maconi, Dirk Schrotenboer, Maria Jaimes, Nancy Marte, Theresa Carlisano, Claire Toland, Jongik Chung, Sandra Cremers, Glenn Corbin
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The purpose of this convening was to propose a research roadmap that orients Dry Eye researchers toward a comprehensive patient-centered approach to diagnosing and treating Dry Eye, Meibomian gland dysfunction (MGD), and related comorbidities with a goal of improving clinical outcomes for Dry Eye/MGD patients. Methods Sixteen participants, including Dry Eye/MGD patients, caregivers, and patient advocates together with a group of experts in Dry Eye, MGD and other fields identified gaps in research on Dry Eye and MGD diagnostic and treatment approaches (age range 20–80; male to female ratio of 7:11; patients: 7). During a 2-day virtual convening, participants were assigned to topic-specific focus-group sessions to discuss and develop research questions pertaining to Dry Eye and MGD. The research questions were compiled into a proposed patient-centered roadmap for Dry Eye and MGD research. Two additional participants contributed to the proposed roadmap following the convening. 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引用次数: 0

摘要

引言 虽然干眼症估计影响了 35% 的人口,但患者和医学界对干眼症并不十分了解。因此,无论是在研究还是临床环境中,诊断和治疗方案往往是非特异性的、临时性的和不充分的,并且以狭隘的行业驱动为重点。本次会议的目的是提出一个研究路线图,引导干眼症研究人员采用以患者为中心的综合方法来诊断和治疗干眼症、睑板腺功能障碍(MGD)及相关合并症,从而改善干眼症/睑板腺功能障碍患者的临床疗效。方法 16 位与会者,包括干眼症/睑板腺功能障碍患者、护理人员和患者权益倡导者,以及干眼症、睑板腺功能障碍和其他领域的专家,共同确定了干眼症和睑板腺功能障碍诊断和治疗方法研究方面的差距(年龄范围 20-80;男女比例 7:11;患者:7)。在为期两天的虚拟会议期间,与会者被分配到特定主题的焦点小组会议中,讨论并提出与干眼症和多功能障碍相关的研究问题。这些研究问题被汇编成一份以患者为中心的干眼症和并发症研究路线图。会议结束后,又有两名与会者对路线图提出了建议。结果 焦点小组确定了 80 多个以患者为中心、对患者和其他利益相关者非常重要的研究问题,并将这些问题汇编成一份拟议的研究路线图。结论 召开此次会议的利益相关者旨在建立一个以患者为中心的统一而全面的方法来治疗干眼症、睑板腺功能障碍和合并症。研究路线图将为研究人员、教育机构、临床医生和其他评估干眼症和睑板腺功能障碍诊断和治疗方案的人员提供参考。
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Engaging Stakeholders to Develop a Roadmap for Dry Eye and MGD PCORI-Funded Research
Introduction Although affecting an estimated 35% of the population, Dry Eye is not well understood by patients and the medical community. As a result, both in research and clinical settings, diagnostic and treatment protocols tend to be non-specific, ad hoc, and inadequate, with a narrow industry-driven focus. The purpose of this convening was to propose a research roadmap that orients Dry Eye researchers toward a comprehensive patient-centered approach to diagnosing and treating Dry Eye, Meibomian gland dysfunction (MGD), and related comorbidities with a goal of improving clinical outcomes for Dry Eye/MGD patients. Methods Sixteen participants, including Dry Eye/MGD patients, caregivers, and patient advocates together with a group of experts in Dry Eye, MGD and other fields identified gaps in research on Dry Eye and MGD diagnostic and treatment approaches (age range 20–80; male to female ratio of 7:11; patients: 7). During a 2-day virtual convening, participants were assigned to topic-specific focus-group sessions to discuss and develop research questions pertaining to Dry Eye and MGD. The research questions were compiled into a proposed patient-centered roadmap for Dry Eye and MGD research. Two additional participants contributed to the proposed roadmap following the convening. Results The focus groups identified over 80 patient-centered research questions important to patients and other stakeholders and compiled these into a proposed research roadmap. Conclusion The convened stakeholders aim to establish a cohesive and comprehensive patient-centered approach to treating Dry Eye, Meibomian Gland Dysfunction, and comorbidities. The research roadmap will serve as a reference for researchers, educational institutions, clinicians, and others evaluating diagnostic and treatment protocols in Dry Eye and MGD.
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来源期刊
Patient Related Outcome Measures
Patient Related Outcome Measures HEALTH CARE SCIENCES & SERVICES-
自引率
4.80%
发文量
27
审稿时长
16 weeks
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