Background/Purpose: Juvenile localized scleroderma (LS) and systemic sclerosis (SSc) are rare rheumatic diseases often associated with severe morbidities. Delays in diagnosis are common, putting children at risk for permanent damage and worse outcomes. This study investigated caregiver perspectives on barriers they encountered while seeking a diagnosis and care for their child’s scleroderma.

Methods: In this cross-sectional study, researchers recruited parents of juvenile LS or SSc patients from a virtual family scleroderma educational conference and a juvenile scleroderma online support group over three months to survey them about their child’s condition and factors affecting diagnosis and treatment.

Results: The response rate was 61% (73/120). The respondents comprised 38 parents of LS patients and 31 parents of SSc patients. Most patients were female (80%), and more than half were non-Hispanic white (55%). The majority of families had at least one person with a college education or higher (87%), traveled < 2 hours to see their doctor (83%), and had private insurance (75%). Nearly half had an annual household income > $100,000 (46%). Caregivers surveyed identified these main barriers to care: lack of knowledge about scleroderma in the medical community, finding reliable information about scleroderma in children, long wait times for a rheumatologist/specialist appointment, balance of school/work and child’s healthcare needs, medication side effects, and identifying effective medications. Respondents said the lack of knowledge about juvenile scleroderma was their most challenging barrier. Diagnosis and systemic treatment initiation were more than one year from initial presentation for approximately 28% and 36% of patients, respectively.

Conclusion: Caregivers of children with LS or SSc surveyed reported many common barriers to the diagnosis, treatment, and ongoing care of juvenile scleroderma. The biggest problem highlighted was the medical community’s lack of knowledge of scleroderma. However, most respondents had relatively high socioeconomic status, so additional studies are needed to reach a broader audience, including caregivers with limited English proficiency, geographical limitations, and financial constraints, to evaluate whether these problems are universal. Identifying care barriers will help direct efforts to address needs better, reduce disparities in care, and ultimately improve patient outcomes.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/caregivers-perspectives-on-barriers-to-care-in-juvenile-localized-and-systemic-scleroderma/