Severe myalgic encephalomyelitis/chronic fatigue syndrome in children and young people: a British Paediatric Surveillance Unit study.

Autor:	Royston AP; Centre for Academic Child Health, University of Bristol Medical School, Bristol, UK ar16623@bristol.ac.uk., Rai M; King's Clinical Trial Unit, King's College London Institute of Psychiatry Psychology and Neuroscience, London, UK., Brigden A; Department of Electrical and Electronic Engineering, University of Bristol, Bristol, UK., Burge S; Centre for Academic Child Health, University of Bristol Medical School, Bristol, UK., Segal TY; Paediatric Department, University College London Hospitals NHS Foundation Trust, London, UK., Crawley EM; Centre for Academic Child Health, University of Bristol Medical School, Bristol, UK.; Paediatrics, Royal United Hospital Bath NHS Trust, Bath, UK.
Jazyk:	angličtina
Zdroj:	Archives of disease in childhood [Arch Dis Child] 2023 Mar; Vol. 108 (3), pp. 230-235. Date of Electronic Publication: 2022 Dec 01.
DOI:	10.1136/archdischild-2022-324319
Abstrakt:	Objectives: Primary objective: to determine the point prevalence and incidence rate of severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in children aged 5-16 years over 13 months. Secondary Objectives: to describe the demographic features, symptoms, impact on activities of daily living, school attendance and time to diagnosis. Design: Prospective surveillance study conducted by the British Paediatric Surveillance Unit. Paediatricians was asked if they had assessed a child with severe ME/CFS (screening definition for prevalence and incidence: children (5-16 years) diagnosed with ME/CFS so severe that they are unable to attend school for more than 1 hour a week during the last 6 weeks of the school term). Participants: Patients 5-16 years of age, seen by paediatricians and two large ME/CFS specialist services across the UK and Ireland. Outcome Measures: Paediatrician-completed questionnaires describing demographics, symptoms, function and treatment, (applying National Institute for Health and Care Excellence (NICE)-recommended criteria to assess severity of ME/CFS). Diagnosis of severe, probable severe or possible severe ME/CFS was made only with evidence of NICE-recommended screening blood tests. Results: 285 cases were reported, of which of which 33 were severe, 4 probable severe and 55 possible severe. Estimated prevalence was 3.2 per million children (95% CI 2.2 to 4.5). Including possible/probable severe ME/CFS gave 8.9 per million children (95% CI 7.2 to 11). The incidence rate was 0.90 per million children-years (95% CI 0.43 to 1.65) (1.97 per million children-years (95% CI 1.24 to 2.99)). Median age was 13 years and 58% of cases were female. Median time to diagnosis was 0.47 years. Conclusions: Although the incidence of children presenting with severe ME/CFS is low, all were very disabled. In addition, the majority receive little or no education. Paediatricians need to consider how to provide rehabilitation and education for these disabled young people. Competing Interests: Competing interests: None declared. (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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