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

作者：Hawley Daniel P^*; Baildam Eileen M; Amin Tania S; Cruikshank Mary K; Davidson Joyce E; Dixon Jennifer; Martin Neil S; Ohlsson Victoria; Pilkington Clarissa; Rangaraj Satyapal; Riley Philip; Sundaramoorthy Chitra; Walsh Jo; Foster Helen E

来源：Rheumatology, 2012, 51(7): 1235-1239.

DOI：10.1093/rheumatology/ker521

• paediatric
• juvenile rheumatology
• scleroderma and related disorders
• skin
• education (patients)
• outcome measures
• primary-care rheumatology
• attitude of health professionals

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). %26lt;br%26gt;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. %26lt;br%26gt;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). %26lt;br%26gt;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.

• 出版日期2012-7