Sjögren’s Syndrome Associated Dry Eye: Impact on Daily Living and Adherence to Therapy

Sjögren’s syndrome-related dry eye disease (SS-DED) often involves more severe dry eye symptoms than people with non-SS dry eye disease (DED). This cross-sectional study employed an anonymous self-administered questionnaire to understand the experience of people living with SS-DED and to identify factors affecting adherence to DED self-care. Participants reported difficulty with visual tasks such as driving, and diminished enjoyment in daily activities due to DED symptoms. Almost 80% reported being worried about a reduced quality of life due to DED, and over 50% reported fear of blindness. The most common reasons for non-adherence were cost of therapy and forgetting to instill drops. Drop rationing to reduce cost of therapy was endorsed by 83% of respondents. Only 3% of respondents had private insurance for non-prescription agents required to treat DED. A quarter of respondents reported they would not disclose non-adherence to their eye care provider. Multiple regression analysis revealed age was a significant contributor to missing drops. This is the first study to report on the financial burden experienced by SS-DED patients in Canada. This paper identified strategies used by patients to reduce the cost of therapy and its impact on adherence to treatment. Patients may be reluctant to disclose challenges regarding adherence to DED therapy, as well as fears of worsening quality of life.