Barriers to care in juvenile localized and systemic scleroderma: an exploratory survey study of caregivers' perspectives.

ABSTRACT:

Background

Juvenile localized scleroderma (LS) and systemic sclerosis (SSc) are rare pediatric conditions often associated with severe morbidities. Delays in diagnosis are common, increasing the risk for permanent damage and worse outcomes. This study explored caregiver perspectives on barriers they encountered while navigating diagnosis and care for their child's scleroderma.

Methods

In this cross-sectional study, caregivers of juvenile LS or SSc patients were recruited from a virtual family scleroderma educational conference and a juvenile scleroderma online interest group. The survey queried respondents about their child's condition and factors affecting diagnosis and treatment.

Results

The response rate was 61% (73/120), with 38 parents of LS patients and 31 paren

SUBMITTER: Stubbs LA 

PROVIDER: S-EPMC10131373 | biostudies-literature | 2023 Apr

REPOSITORIES: biostudies-literature