Systemic sclerosis & Raynaud's
Barriers to care in juvenile localized and systemic scleroderma: an exploratory survey study of caregivers’ perspectives
Authors' conclusion
Caregivers of children with LS or SSc reported numerous common barriers to the diagnosis, treatment, and ongoing care of juvenile scleroderma. The major problem highlighted was the lack of knowledge of scleroderma within the general medical community.
Study context
- Population
- Caregivers of juvenile localized scleroderma (LS) or systemic sclerosis (SSc) patients recruited from a virtual family scleroderma educational conference and a juvenile scleroderma online interest groupresponse rate 61% (73/120)
- Participants
- 73 participants
- Exposure
- LS vs SSc
- LSn = 38
- SScn = 31
- Outcome
- Caregiver-reported barriers to diagnosis and care of their child's scleroderma
Methodological detailssurvey, exploratory
- Survey
- Exploratory
Main finding
As reported in the abstract
Barriers to care
- Barriers identified: lack of knowledge about scleroderma in the medical community, finding reliable information about pediatric scleroderma, long wait times/distances for a rheumatology/specialist appointment, balance of school/work and child's healthcare needs, medication side effects, and identifying effective medications
- Barrier most identified as a major problem: lack of knowledge about juvenile scleroderma in the medical community
- Public insurance, household income <$100,000 and Hispanic ethnicity associated with specific barriers to care
- Lower socioeconomic status associated with longer travel times to the rheumatologist/specialist
Observational data: associations, not effects.
Further findings
Diagnosis and systemic treatment initiation >1 year from initial presentation
- Diagnosis >1 year from presentation (approximately)
- 28%
- Systemic treatment initiation >1 year from presentation (approximately)
- 36%
Respondent characteristics
- Female patients
- 80%
- Non-Hispanic white
- 55%
- At least one family member with college education or higher
- 87%
- Travelled ≤ 2 h to rheumatologist
- 83%
- Private insurance
- 75%
- Annual household income ≥ $100,000
- 46%
Erroneous information given to families of LS patients
- Families of LS patients commonly given erroneous information about the disease, including on the need for systemic immunosuppressants in deep tissue or rapidly progressive disease
Original publication
Barriers to care in juvenile localized and systemic scleroderma: an exploratory survey study of caregivers’ perspectives. Pediatr Rheumatol Online J. Published 25 April 2023. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →