Patient Related Outcome Measures (May 2024)

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

  • Warren NA,
  • Maskin SL,
  • Gurupur V,
  • Rector DA,
  • Adelman D,
  • Howell S,
  • McAree J,
  • Dibble R,
  • Carlisano C,
  • Maconi DP,
  • Schrotenboer D,
  • Jaimes M,
  • Marte N,
  • Carlisano T,
  • Toland C,
  • Chung J,
  • Cremers SL,
  • Corbin GS

Journal volume & issue
Vol. Volume 15
pp. 143 – 186

Abstract

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Natalia A Warren,1,2,* Steven L Maskin,3,* Varadraj Gurupur,4,* Deidre A Rector,1,* Diana Adelman,1,* Susan Howell,1,* John McAree,1,* Ruthie Dibble,1,* Celia Carlisano,1,* David P Maconi,1,* Dirk Schrotenboer,5,* Maria Jaimes,3,* Nancy Marte,3,* Theresa Carlisano,1,* Claire Toland,3,* Jongik Chung,6,* Sandra L Cremers,7 Glenn S Corbin8 1Not A Dry Eye Foundation, Daytona Beach, FL, USA; 2School of Modeling, Simulation, and Training, University of Central Florida, Orlando, FL, USA; 3Dry Eye and Cornea Treatment Center, Tampa, FL, USA; 4Department of Health Management and Informatics, University of Central Florida, Orlando, FL, USA; 5Dry Eye Spa of West Michigan, Holland, MI, USA; 6Department of Statistics and Data Science, University of Central Florida, Orlando, FL, USA; 7Johns Hopkins Medical Institution, Baltimore, MD, USA; 8Wyomissing Optometric Center, Inc, Wyomissing, PA, USA*These authors contributed equally to this workCorrespondence: Natalia A Warren, Not A Dry Eye Foundation, 1019 Sea Shell Court, Daytona Beach, FL, 32124, Tel +1 855-544-6553, Email [email protected]: 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.Keywords: dry eye disease, Meibomian gland dysfunction, patient-centered research, patient advocacy, ocular surface disease, patient care

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