Background/Purpose: Delays in diagnosis and treatment of pediatric localized scleroderma (LS) are common due to the under-recognition at initial presentation. While previous studies on pediatric rheumatic diseases have highlighted the impact race, ethnicity, and socioeconomic disparities have on access to care, there is a lack of understanding for those with LS. We examined various Census tract-level datasets and distances to care in a single-center cohort of children with LS to identify factors preventing care.

Methods: A retrospective chart review was performed for patients diagnosed with LS at a single center from January 2021 to December 2024. Those with systemic scleroderma were excluded. Census tract-level datasets for the Childhood Opportunity Index (COI), Social Vulnerability Index (SVI), and Area Deprivation Index (ADI) were utilized. Patient demographics, distance to care, and Census tract data were analyzed using standard statistical analysis.

Results: A total of 52 patients were included. Most patients were Female (63.5%) and Non-Hispanic White (65.4%) with a mean age of 13 years (Table 1). The farthest driving distance to our center was 1,796 miles, and the mean was 128 miles (Figure 1). There was a statistically significant negative correlation between distance to our center and the SVI Racial and Ethnic Minority Status Percentile Statewide and Nationwide (p=0.0002 and p=0.0012 respectively). There was also a significant difference in the mean distance to our center across the COI Overall Index Nationwide and Statewide (p=0.0314 and p=0.0335 respectively) and COI Overall Education Statewide (p=0.0312) (Table 2). There were no significant findings between race/ethnicity, gender, insurance status, or language.

Conclusion: In conclusion, patients from our center come from diverse backgrounds and travel long distances to receive care. Statistically significant associations between distance to care and Census tract-level data are prevalent. Specifically, childhood opportunity was found to be significant overall nationwide and statewide as well as education statewide. Patients who live closest to our center have higher social vulnerability. These findings are enlightening and begin to examine the burdens of healthcare our patients face outside of the office visit. Future studies are needed to determine potential interventions to improve access to care.

Table 1. Patient Demographics

Table 2. State and Nationwide Childhood Opportunity Index Domain Levels by Diagnosis

Figure 1. Geographic Distribution of Children with Localized Scleroderma in Northern Texas

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/investigating-barriers-to-care-through-childhood-opportunity-social-vulnerability-area-deprivation-and-distance-to-care-in-pediatric-localized-scleroderma/