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EW CORNEA 40 January 2019 by Vanessa Caceres EyeWorld Contributing Writer • Are systemic tetracyclines effec- tive in patients with meibomiani- tis or rosacea and dry eye? Researchers did not find any notable difference in the ranking by patient subgroups as defined by underlying diagnosis. Round two of the survey, during which patients rated 28 out- comes, had similar results. "The 10 most important outcomes included 6 symptoms, 3 outcomes associat- ed with quality of life, and 1 sign or clinical testing outcome," the authors wrote. "The three most im- portant outcomes were ocular burn- ing or stinging, ocular discomfort, and ocular pain." Some of the other important outcomes as ranked by patients were ocular dryness, visual acuity, impact of dry eye disease on daily life, vision-related quality of life, and patient's acceptability or satisfaction with treatment. Common tests used to assess dry eye, such as ocular surface stain- ing, tear production or volume, and conjunctival staining ranked low in the study. The lowest-ranked out- comes among the 28 outcomes rat- ed by patients were dryness of the mouth and salivary flow; however, as might be expected, those were rated as more important by patients with Sjögren's syndrome. Clinical, research implications The focus on patient priorities for dry eye research questions and outcomes is overdue, said Ms. Petris, who is a patient advocate and a dry eye patient herself. "The disconnect between dry eye signs and symp- toms has been widely acknowledged and talked about for a long time, but knowing the disconnect exists doesn't seem to have helped steer the focus of either clinical care or research. My hope is that this study, where the patient's voice has been documented so powerfully, could help change that in favor of pa- tients," she said. "The extent of the disconnect between what patients value and what exists in dry eye research is surprising to us," Dr. Saldanha said. "It is a problem that the field needs to urgently address so that we are identifying effective treatments The research questions that survey participants identified as important, in order of importance, were: • Is patient education effective in treating patients with dry eye? • Are environmental modifications effective in treating patients with dry eye? • Are topical anti-inflammatory agents such as cyclosporine and corticosteroids effective in treat- ing patients with dry eye? • Are autologous serum tears effec- tive in treating patients with dry eye? • Are autologous serum drops effec- tive in improving ocular irritation in patients with Sjögren's syn- drome or graft-versus-host disease and dry eye? • Are autologous serum drops effec- tive in improving ocular irritation, conjunctival and corneal dye staining in patients with Sjögren's syndrome or graft-versus-host disease and dry eye? • Are oral omega-3 fatty acids effec- tive in patients with dry eye? • Is a specific combination of treatments more effective than another combination in treating patients with dry eye? The following questions were ranked as moderately important: • Are systemic anti-inflammatory agents effective in patients with dry eye and systemic disease such as rheumatoid arthritis? • Is a specific sequence of treat- ments more effective than anoth- er sequence in treating patients with dry eye? • Are systemic immunosuppressive agents effective in patients with dry eye and systemic disease such as rheumatoid arthritis? Next, researchers surveyed the more than 13,700 subscribers of KeratoScoop, a weekly online news- letter created by fellow study author Rebecca Petris, founder of the Dry Eye Company, Poulsbo, Washing- ton. The Dry Eye Company has an online information portal called Dry Eye Zone, and visitors to that site are typically the ones who subscribe to KeratoScoop. A web link for the study survey was sent to KeratoScoop subscribers. Those participating in the survey were asked to rate the importance of questions prioritized by clinicians and rate the impor- tance of the popular outcomes. The study also had a round two survey during which the results from round one were compiled, and patients were asked to rate each outcome again, taking into account their own response and the respons- es from their peers in round one. Among the KeratoScoop sub- scribers, 622 patients completed round one of the survey and 420 completed round two. Focusing on round two survey responders, 56% were age 60 or older, 83% were female, and 94% were white. The majority live in the U.S. and Cana- da, although a total of 15 countries were represented among the respon- dents. More than two-thirds had been living with dry eye for 6 years or longer, with blepharitis as the most common underlying diagnosis (43%). However, 38% had received no underlying diagnosis. Ranking the research questions When evaluating the research questions, patients ranked 8 of 12 questions as important and 4 of the 12 as moderately important. Study illuminates patient priorities R esearch for dry eye often focuses on changes in disease based on signs as measured with clinical tests. Yet a new study shines a spot- light on the importance of symp- toms and quality of life, as priori- tized by patients. The study, "Research questions and outcomes prioritized by patients with dry eye," identifies and ranks research questions and outcomes that are important to dry eye pa- tients. 1 Led by Ian Saldanha, MBBS, MPH, PhD, assistant professor, Cen- ter for Evidence Synthesis in Health, Department of Health Services, Pol- icy, and Practice, and Department of Epidemiology, Brown University School of Public Health, Providence, Rhode Island, researchers used a multi-step process that started with identifying 24 research questions that are important to clinicians when measuring dry eye study out- comes. Those results were previously published. 2 For the current study, they focused on 12 of the 24 re- search questions that clinicians said were the most important. Researchers then focused on outcomes used in previous dry eye research, identified via a literature review. "Across all 158 studies denoted as existing research for dry eye, … we identified 109 unique outcomes," the authors wrote. "Among the 109 unique outcomes, we categorized 18 as popular and 91 as unpopular in existing research." Focusing dry eye research with patient guidance Research highlight continued on page 42