Barriers to care in juvenile localized and systemic scleroderma: an exploratory survey study of caregivers’ perspectives
Stubbs L, Ferry A, Guffey D, Loccke C, Wade E, Pour P, Ardalan K, Chira P, Ganske I, Glaser D, Higgins G, Luca N, Moore K, Sivaraman V, Stewart K, Vasquez-Canizares N, Hunt R, Maricevich R, Torok K, Li S. Barriers to care in juvenile localized and systemic scleroderma: an exploratory survey study of caregivers’ perspectives. Pediatric Rheumatology 2023, 21: 39. PMID: 37098622, PMCID: PMC10131373, DOI: 10.1186/s12969-023-00819-6.Peer-Reviewed Original ResearchMeSH KeywordsCaregiversChildCross-Sectional StudiesFemaleHealth Services AccessibilityHumansMaleScleroderma, SystemicSurveys and QuestionnairesConceptsSystemic sclerosisJuvenile sclerodermaSSc patientsMedical communityHealthcare needsSystemic treatment initiationSocioeconomic statusMedication side effectsGeneral medical communityRare pediatric conditionChildren's healthcare needsCross-sectional studyLow socioeconomic statusSchool/workNon-Hispanic whitesLack of knowledgeHigher socioeconomic statusAnnual household incomeActive diseaseProgressive diseaseSystemic immunosuppressantsMost patientsInitial presentationSevere morbidityTreatment initiation