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

Lookup NU author(s): Emerita Professor Helen Foster

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Abstract

Objectives. 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). Conclusion. 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.

Publication metadata

Author(s): Hawley DP, Baildam EM, Amin TS, Cruikshank MK, Davidson JE, Dixon J, Martin NS, Ohlsson V, Pilkington C, Rangaraj S, Riley P, Sundaramoorthy C, Walsh J, Foster HE

Publication type: Article

Publication status: Published

Journal: Rheumatology

Year: 2012

Volume: 51

Issue: 7

Pages: 1235-1239

Print publication date: 16/02/2012

Date deposited: 12/09/2012

ISSN (print): 1462-0324

ISSN (electronic): 1462-0332

Publisher: Oxford University Press

URL: http://dx.doi.org/10.1093/rheumatology/ker521

DOI: 10.1093/rheumatology/ker521

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