title: Access to care for children and young people diagnosed with localized scleroderma or juvenile SSc in the UK.
abstract: OBJECTIVE
  To describe pathways of care and referral to paediatric rheumatology from onset of first symptom (noticed by the patient or their family) to diagnosis for children and young people diagnosed with localized scleroderma (LS) or juvenile SSc (jSSc).
  
  
  METHODS
  Retrospective case note audit of patients under paediatric rheumatology care who presented during January 2005-January 2010. Data included disease subtype, sex, age at key points in the referral pathway and health care professional (HCP) contact. All patient and HCP data were pseudo-anonymized in accordance with good clinical practice.
  
  
  RESULTS
  Data were from eight UK centres that saw 89 cases: 62 females, 26 males; 73 LS, 16 jSSc. Median time from first symptom to first HCP review was 4 (range 0-72) months (LS) and 1 (range 0-50) month (jSSc). Median time from first symptom to paediatric rheumatology review was 15 (range 1-103) months (LS) and 7 (range 0-50) months (jSSc). Median time from first HCP review to first paediatric rheumatology review was 11 (range 0-103) months (LS) and 2 (range 0-10) months. First HCP seen (74%) was usually a general practitioner. The referring HCP to paediatric rheumatology was usually a dermatologist (56%) for LS. Median time from first symptom to diagnosis was 13 (range 1-102) months (LS) and 8 (range 1-50) months (jSSc).
  
  
  CONCLUSIONS
  A prolonged interval occurs from first symptom to definitive diagnosis, which may adversely affect outcome. There is a need to raise awareness of this rare diagnosis and facilitate earlier recognition.
authors.affiliation: Department of Paediatric Rheumatology, Sheffield Children's Hospital, Western Bank, Sheffield S10 2TH, UK. dhawley@doctors.org.uk
authors.forename: Daniel P
authors.initials: DP
authors.lastname: Hawley
authors.forename: Eileen M
authors.initials: EM
authors.lastname: Baildam
authors.forename: Tania S
authors.initials: TS
authors.lastname: Amin
authors.forename: Mary K
authors.initials: MK
authors.lastname: Cruikshank
authors.forename: Joyce E
authors.initials: JE
authors.lastname: Davidson
authors.forename: Jennifer
authors.initials: J
authors.lastname: Dixon
authors.forename: Neil S
authors.initials: NS
authors.lastname: Martin
authors.forename: Victoria
authors.initials: V
authors.lastname: Ohlsson
authors.forename: Clarissa
authors.initials: C
authors.lastname: Pilkington
authors.forename: Satyapal
authors.initials: S
authors.lastname: Rangaraj
authors.forename: Philip
authors.initials: P
authors.lastname: Riley
authors.forename: Chitra
authors.initials: C
authors.lastname: Sundaramoorthy
authors.forename: Jo
authors.initials: J
authors.lastname: Walsh
authors.forename: Helen E
authors.initials: HE
authors.lastname: Foster
mesh_terms: D000293:Adolescent; D017668:Age of Onset; D002648:Child; D002675:Child, Preschool; D003937:Diagnosis, Differential; D019468:Disease Management; D018450:Disease Progression; D042241:Early Diagnosis; D005260:Female; D005500:Follow-Up Studies; D006297:Health Services Accessibility; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D009017:Morbidity / Q000639:trends; D011379:Prognosis; D011785:Quality Assurance, Health Care; D012189:Retrospective Studies; D012594:Scleroderma, Localized / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy*; D012595:Scleroderma, Systemic / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy*; D013997:Time Factors; D006113:United Kingdom / Q000453:epidemiology