Access to care for children and young people diagnosed with localized scleroderma or juvenile SSc in the UK.
Rheumatology (Oxford)
; 51(7): 1235-9, 2012 Jul.
Article
em En
| MEDLINE
| ID: mdl-22344577
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.
Texto completo:
1
Coleções:
01-internacional
Contexto em Saúde:
11_ODS3_cobertura_universal
/
2_ODS3
Base de dados:
MEDLINE
Assunto principal:
Garantia da Qualidade dos Cuidados de Saúde
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Esclerodermia Localizada
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Escleroderma Sistêmico
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Gerenciamento Clínico
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Diagnóstico Precoce
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Acessibilidade aos Serviços de Saúde
Tipo de estudo:
Diagnostic_studies
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Observational_studies
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Prognostic_studies
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Risk_factors_studies
/
Screening_studies
Aspecto:
Determinantes_sociais_saude
Limite:
Adolescent
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Child
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Child, preschool
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Female
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Humans
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Infant
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Male
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Newborn
País/Região como assunto:
Europa
Idioma:
En
Revista:
Rheumatology (Oxford)
Ano de publicação:
2012
Tipo de documento:
Article