Access to care for children and young people diagnosed with localized scleroderma or juvenile SSc in the UK

Rheumatology
Daniel P HawleyHelen E Foster

Abstract

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). 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. 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 ...Continue Reading

References

Nov 1, 1995·Mayo Clinic Proceedings·L S PetersonW P Su
Sep 6, 2005·Arthritis and Rheumatism·Francesco ZulianUNKNOWN Juvenile Scleroderma Working Group of the Pediatric Rheumatology European Society (PRES)
Dec 22, 2005·Rheumatology·F ZulianUNKNOWN Juvenile Scleroderma Working Group of the Pediatric Rheumatology European Society (PRES)
May 23, 2006·Lancet·Christina CharlesDaniel E Furst
Nov 30, 2006·Arthritis and Rheumatism·Giorgia MartiniUNKNOWN Juvenile Scleroderma Working Group of the Pediatric Rheumatology European Society
Sep 15, 2007·Arthritis Research & Therapy·Christopher P Denton
Jan 17, 2009·Annals of the Rheumatic Diseases·O Kowal-BieleckaUNKNOWN EUSTAR Co-Authors
Mar 2, 2010·Arthritis Care & Research·Ariane L HerrickEileen M Baildam
Feb 10, 2011·Arthritis and Rheumatism·Ivan Foeldvari

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Citations

Aug 6, 2013·Current Opinion in Rheumatology·Francesco ZulianFrancesca Sperotto
May 23, 2014·Rheumatology·Daniel P HawleyHelen E Foster
Oct 23, 2015·Indian Journal of Pediatrics·Liza J McCann, Clare E Pain
Nov 5, 2013·Rheumatic Diseases Clinics of North America·Ivan Foeldvari
Mar 16, 2016·Revista chilena de pediatría·Alexis StricklerGonzalo de Toro
Mar 9, 2017·Journal of the European Academy of Dermatology and Venereology : JEADV·A Lis-ŚwiętyL Brzezińska-Wcisło
May 3, 2016·The Journal of Rheumatology·Tania CellucciFiona Webster
May 25, 2012·The Australian Journal of Rural Health·Rouve Jan ForbesAndrea Reupert
Dec 2, 2019·World Journal of Pediatrics : WJP·Suzanne C Li, Rong-Jun Zheng
Nov 30, 2019·ACR Open Rheumatology·Eveline Y WuUNKNOWN Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry Investigators
May 8, 2018·European Journal of Pediatrics·Tamás ConstantinKathryn S Torok
Jul 23, 2018·Pediatric Clinics of North America·Suzanne C Li
Apr 27, 2021·Best Practice & Research. Clinical Rheumatology·Ivan Foeldvari, Kathryn S Torok

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