Noninfectious uveitis (NIU) is a major cause of visual impairment. In the United States alone, uveitis accounts for 10% to 15% of severe vision loss and worldwide it accounts for 5% to 10% of severe vision loss.^1,2 Underlying systemic autoimmune conditions such as juvenile idiopathic arthritis and sarcoidosis are associated with many cases of NIU, yet 30% to 60% of NIU is idiopathic.¹ Although uveitis affects individuals of all ages, the disease most commonly presents among young adults of working age.²

Corticosteroid therapy remains the primary treatment for ocular inflammation despite potential local and systemic side effects. Steroid-sparing immunosuppressive therapy (IMT) is often used as an effective, alternative treatment to control inflammation, taper and discontinue steroids to avoid steroid toxicities, and yield disease remission. Systemic IMT can be administered through oral, subcutaneous, and intravenous routes. This therapy should be prescribed by physicians well-versed and comfortable with these medications. IMT requires frequent monitoring through ophthalmic examination for disease response, laboratory testing for adverse effects, and communication with the patient and physicians in the patient’s care team to create an optimal medication and dosing regimen.^3,4 An informed consent process regarding the benefits, risks, and alternatives of these medications should be reviewed with the patient and their caregivers prior to initiation of steroid-sparing IMT.

Given the parameters of IMT, patients play a significant role in execution of treatment, which includes taking medications correctly, attending follow-up visits, and obtaining monitoring blood tests. Adherence encompasses the patient’s role of following the treatment recommendations instituted by the physician.⁵ Studies reveal an association with improved inflammation control when patients adhere to IMT.^6,7 A study examining the impact of infliximab infusions on pediatric uveitis revealed that 89% of patients achieved disease control when switched to infusions from self-administered medications. Incomplete adherence to infusions was associated with a 10 times greater likelihood of having active inflammation.⁷ Despite the benefit of inflammation control, adherence rates to IMT remain low longitudinally. A retrospective study demonstrated a drop in the adherence rate from 70% at 1 year to 58% at 2 years after IMT initiation, raising questions regarding reasons for nonadherence.⁶ In addition to discontinuation due to adverse effects, other factors such as poor understanding of disease, forgetfulness, fear, misconceptions, and complex medication regimens are possible explanations for nonadherence.⁵ Exploration of effective interventions for improving adherence is needed.

PATIENT EDUCATION

Patient education is a potential intervention for improving medication adherence. While educational discussions occur in the clinical setting, patients may refer to extraneous materials for further understanding, referred to as patient education materials (PEM).² Because 43% of adults exhibit health literacy skills at or below basic level, the United States Department of Health and Human Services (HHS) recommends writing PEM at a 6th grade comprehension level. However, many of the PEM within ophthalmology are written above basic levels.⁸ Ayoub et al conducted a Google search to explore the readability of uveitis PEM and revealed that none of the 50 most accessible uveitis websites complied with HHS recommendations. These barriers to information fuel the circumstances encountered by patients with lower literacy, such as increased health care spending and illness severity, and propagate poor health literacy and outcomes.⁹

In addition, uveitis PEM lack breadth, availability, and overall quality.⁸ Uveitis management remains complex and nuanced, because IMT approved for the treatment of rheumatologic conditions are used in controlling ocular inflammation as well.^2,8 At this time, adalimumab is the sole FDA-approved IMT for the treatment of uveitis and autoimmune diseases like psoriasis and rheumatoid arthritis. Despite the usage of additional IMT such as methotrexate and mycophenolate in clinical practice for uveitis, one study revealed the mention of uveitis only once among the 10 most searched results for methotrexate.⁸

Patients express interest in accessing PEM.^10-12 One study revealed that 73% of glaucoma patients desired online information but only 14% were provided resources.¹² Specifically within uveitis, a study conducted in 2019 investigated the use of a uveitis-specific patient passport (UPP). The UPP, designed as a handheld booklet, is a collaborative provider-patient health tool used for disease management and includes information regarding uveitis, medications and administration instructions, appointment preparation, and additional patient resources. Ninety-seven percent of patients using the tool expressed increased confidence with management and 93% endorsed increased knowledge. Patients desired a more concealed version of the UPP, such as an electronic application, for ease of usage, long-term storage of information, and daily reminders.¹⁰ It is important to acknowledge this critical gap in appropriate uveitis PEM in order to encourage the development of more suitable materials.

CONCLUSION

Uncontrolled uveitis poses a significant threat to vision. The initiation of IMT offers a route for remission, especially in adherent patients. Despite the challenges that IMT initiation may present, careful monitoring and medication adjustments depending on patient response are imperative. Given the nuanced nature of uveitis therapy, updated, thorough, and comprehensible PEM are both needed and desired by patients. RP

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