Engaging Stakeholders to Develop a Roadmap for Dry Eye and MGD PCORI-Funded Research

• Published in: Patient related outcome measures 2024-05, Vol.15, p.143-186
• Main Authors: Warren, Natalia A, Maskin, Steven L, Gurupur, Varadraj, Rector, Deidre A, Adelman, Diana, Howell, Susan, McAree, John, Dibble, Ruthie, Carlisano, Celia, Maconi, David P, Schrotenboer, Dirk, Jaimes, Maria, Marte, Nancy, Carlisano, Theresa, Toland, Claire, Chung, Jongik, Cremers, Sandra L, Corbin, Glenn S
• Format: Article
• Language: English
• Subjects: Diagnosis; dry eye disease; Eye diseases; Medical research; Medicine, Experimental; meibomian gland dysfunction; ocular surface disease; Patient advocacy; patient care; patient-centered research
• ISSN: 1179-271X; 1179-271X
• DOI: 10.2147/PROM.S438290

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. 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. The focus groups identified over 80 patient-centered research questions important to patients and other stakeholders and compiled these into a proposed research roadmap. 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.