Background: Uveitis is a leading cause of preventable blindness in the United States and has been estimated to account for 10-15% of total blindness in the developed world. In order to prevent complications, non-corticosteroid immunomodulatory therapies (IMT) play an important role in achieving long-term remission in patients with chronic ocular inflammatory diseases. However, these medications require routine laboratory monitoring, have significant out-of-pocket costs for uninsured patients, and often require more than one agent to adequately control ocular inflammation. This study aims to evaluate the barriers to adherence with IMT for patients with uveitis and ocular inflammatory diseases across multiple regions of the United States.

Methods: A multicenter survey of adult and pediatric patients with ocular inflammatory diseases undergoing treatment with immunomodulatory therapy was conducted between September 2021 and August 2022. Participating sites included the Johns Hopkins Wilmer Eye Institute, Wong Eye Institute of the University of Texas at Austin, the University of Wisconsin, the University of Minnesota, Veterans Affairs Hospital of Minneapolis, and Washington University of St. Louis. Each patient completed a self-reporting survey of 45 questions to identify barriers to adherence.

Results: The survey was completed by 98 subjects, of whom were 71% white, 67% female, and 61% had a college or advanced degree. Nearly half (49%) were on two or more IMTs of which the most common were methotrexate (37%), mycophenolate (36%), or adalimumab (36%). The most frequent dosing regimen was twice a day (34%) and in addition to the IMT, 20% of patients took 8 or more medications. Limitations to completing laboratory studies to monitor for drug-related side-effects included finding time (10%), and cost (22%). Nearly half (52%) of patients required reminders to take their medications and 20% found it difficult to take IMT regularly with 12% struggling to take medications multiple times a day. A lack of refills resulted in 15% of patients missing doses. The cost of monthly refills ranged widely between less than $5 (27%), to over $1000 (4%). The majority of patients (98%) did not report the cost of their IMT refill as a barrier.

Conclusions: Socioeconomic barriers to IMT treatment include laboratory study cost, difficulty with medication administration, and adhering to medication schedules. Monthly cost of medication was high for some patients, but no patients were unable to take IMT due to insurance loss. Addressing these barriers can help increase IMT adherence for uveitis patients and promote better clinical outcomes.