Abstract
Purpose Localised scleroderma (LS) and juvenile systemic sclerosis (jSSc) are very rare paediatric diseases managed by paediatric rheumatologists and dermatologists[1]. Optimal treatment is controversial in the absence of clinical trials, but most paediatric rheumatologists advocate systemic immunosuppression to avoid progressive deformity, functional disability and disfigurement[2]. We aimed to describe pathways through which children and young people receive a diagnosis of LS or jSSc, and to document these pathways from the time the first symptom was noticed by the patient or their family, through to the time when a diagnosis of LS or jSSc was first considered. We also aimed to document the health care professionals involved in these pathways to diagnosis.
Highlights
Symptoms were first noticed at a mean age of 6.8 years (1month–15 years) for Localised scleroderma (LS) and 8.5 years (9 months – 15 years) for juvenile systemic sclerosis (jSSc)
First health care professional (HCP) seen was usually (74%) a General Practitioner (GP)
The median number of HCPs seen prior to referral to a paediatric rheumatologist was 2 (1-5)
Summary
Daniel P Hawley5*, Eileen M Baildam, Tania S Amin, Mary K Cruikshank, Joyce E Davidson, Jennifer Dixon, Neil S Martin, Victoria Ohlsson, Clarissa A Pilkington, Satyapal Rangaraj, Philip Riley, Chitra Sundaramoorthy, Jo Walsh, Helen E Foster. Purpose Localised scleroderma (LS) and juvenile systemic sclerosis (jSSc) are very rare paediatric diseases managed by paediatric rheumatologists and dermatologists[1]. Optimal treatment is controversial in the absence of clinical trials, but most paediatric rheumatologists advocate systemic immunosuppression to avoid progressive deformity, functional disability and disfigurement[2]. We aimed to describe pathways through which children and young people receive a diagnosis of LS or jSSc, and to document these pathways from the time the first symptom was noticed by the patient or their family, through to the time when a diagnosis of LS or jSSc was first considered. We aimed to document the health care professionals involved in these pathways to diagnosis
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