Background/Purpose: Chronic noninfectious uveitis (CU) in pediatric patients is often asymptomatic and can cause vision loss, requiring frequent ophthalmologist visits and long-term treatment. This survey aimed to evaluate perception of the overall impact of CU on patients and their families and to describe the relative contributions of financial costs, healthcare access, and treatment adherence to perceived burden.

Methods: With input from patient representatives, a questionnaire was developed including ~65 questions: multiple-choice, Likert-scale, and open-ended. It was administered via REDCap at a pediatric tertiary center between April-June 2024. Participants included English-speaking guardians or adult patients (≥ 18 yo) diagnosed with CU < age 18, who received care in a coordinated ophthalmology/rheumatology clinic. Patients were asked to score “overall burden”; to categorize factors (eg. dollars spent per month, commute time to appointments), and to score perceived burdens from each category (cost, travel, obtaining medicine, giving medicine, impact on work/school/family, and emotional concerns). Data was analyzed using descriptive statistics, Wilcoxon rank sum tests, and Spearman’s rank correlations.

Results: A total of 46 participants completed the survey. 93% of respondents (n=43) answered the question of their perceived overall burden of uveitis care. 61% reported a perceived overall burden sentiment of “neutral” while 40% reported “difficult”. Higher burden (difficult vs. neutral) was significantly associated with patient reported higher burdens from categories: cost of care (p = 0.008), burden from travel to appointments (p=0.009), burden on family (p=0.032) and emotional concerns (p=0.04). There was no correlation between burden and participant age. Nearly half of participants were unaware of their uveitis subtype, and many did not know their monthly medical expenses. Spearman correlation confirmed significant positive associations of perceived overall burden with patient reported higher burdens from categories: cost of care (rh=0.48, p=0.001), burden from travel to appointments (rh=0.37, p=0.012), burden on family (rh=0.33, p=0.025), and emotional concerns (rh=0.30, p=0.047).

Conclusion: The study describes the burden faced by pediatric CU patients and their families. Cost and travel requirements were perceived as the greatest contributors. Limitations of this pilot study include it being performed at a single center and survey being restricted to patients in a coordinated uveitis clinic. Further directions include quantifying burden in a larger cohort and evaluating whether these same factors are the greatest contributors.

Table 1. Cohort demographics.

Figure 1. Categories Represented in Survey Questions. Each segment in this pie chart represents a category assessed in the survey, including Demographic information, Patient Reported Perceived Overall Burden, Patient Reported Perceived Burden from Specific Categories, Family Impact, Work Impact, School Impact, Burden of Appointments, Uveitis Activity, Medication, Travel for Care, and Cost of Care/Financial Information. The size of each segment corresponds to the proportion of survey questions dedicated to the category.

Panels a-d: Wilcoxon rank-sum tests of association of Overall burden (x-axis) and burden from individual categories (y-axis). Overall burden: “Considering the ways uveitis affects your life and finances, how difficult is receiving uveitis care on the patient and their family/caretaker(s)? (Note, in this survey we are not focusing on emotional burden)”; scoring: Very easy (1), Easy (2), Neutral (3), Difficult (4), Very Difficult (5). Every dot represents a patient.

Panels e-h: Spearman’s rank correlations of patient reported burden from individual categories (x-axis) and perceived overall burden (y-axis). Burden of individual categories: “Please rank what factors of uveitis care are most burdensome for the patient and guardian”; scoring: Not a Burden (1), Neutral (3), a Great Burden (5). Individual categories include Cost of care (E), Burden from travel to appointments (F), Burden on Family (G), Emotional Concerns (H). Rho: represents strength of correlation. P-value represents statistical significance. Larger dot size represents more patients.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/quantifying-burden-of-uveitis-care-for-pediatric-uveitis-patients-and-caregivers/