Centre for Academic Child Health, University of Bristol Medical School, Bristol, UK
University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK.
BMJ Paediatr Open. 2024 Mar 7;8(1):e002436. doi: 10.1136/bmjpo-2023-002436.
Severe myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) in children and young people (CYP) is a little-understood condition which significantly impacts education, development and quality of life. We used data from a population-wide surveillance study to explore the screening investigation, referral and management of suspected cases of paediatric severe ME/CFS.
A British Paediatric Surveillance Unit (BPSU) study reported cases of CYP with suspected severe ME/CFS between February 2018 and February 2019. Paediatricians reporting cases to BPSU and allied healthcare professionals in two large specialist paediatric ME/CFS centres were invited to complete questionnaires for CYP meeting the surveillance case definition. The study focused primarily on CYP with confirmed severe ME/CFS and the extent to which their care met NICE (The National Institute for Health and Care Excellence) recommendations but also considered separately those with probable or possible severe ME/CFS.
This study includes a total of 92 CYP with suspected severe ME/CFS; 33 meeting criteria for severe ME/CFS and an additional 59 classified as probable or possible severe ME/CFS. For 16 possible cases, incomplete investigation to exclude alternative diagnoses prevented confirmation of a severe ME/CFS diagnosis. Only 21 of 33 (64%) confirmed severe ME/CFS cases had been referred to specialist services. The management provided varied considerably between patients and four received nothing at all. Of the management provided, the most frequent approaches were medication (67%), activity management (61%) and physiotherapy (61%). Domiciliary assessments and support, and social services referrals were received by 12% and 6% of confirmed severe cases. Similar proportions of management approaches were seen in probable/possible severe ME/CFS.
Full investigation is frequently incomplete in CYP with suspected severe ME/CFS and recommendations for referral and management are poorly implemented, in particular the needs of CYP who are unable to leave their home might be poorly met.
儿童和青少年（CYP）中的严重肌痛性脑脊髓炎或慢性疲劳综合征（ME/CFS）是一种了解甚少的疾病，它会严重影响教育、发育和生活质量。我们使用来自全人群监测研究的数据，探讨了疑似儿科严重 ME/CFS 病例的筛查调查、转诊和管理。
英国儿科监测单位（BPSU）研究报告了 2018 年 2 月至 2019 年 2 月期间 CYP 疑似严重 ME/CFS 的病例。向向 BPSU 报告病例的儿科医生和两家大型儿科 ME/CFS 专科中心的相关医疗保健专业人员邀请他们为符合监测病例定义的 CYP 填写问卷。该研究主要关注符合确诊严重 ME/CFS 的 CYP，以及他们的护理在多大程度上符合 NICE（英国国家健康与临床优化研究所）的建议，但也分别考虑了那些可能或可能患有严重 ME/CFS 的 CYP。
本研究共纳入 92 例疑似严重 ME/CFS 的 CYP；33 例符合严重 ME/CFS 标准，另有 59 例归类为可能或可能患有严重 ME/CFS。对于 16 例可能病例，由于调查不完整无法排除其他诊断，因此无法确诊严重 ME/CFS。仅 33 例（64%）确诊的严重 ME/CFS 病例中有 21 例被转介至专科服务。患者之间的管理方法差异很大，其中 4 例患者未接受任何治疗。在提供的管理中，最常见的方法是药物治疗（67%）、活动管理（61%）和物理治疗（61%）。12%和 6%的确诊严重病例接受了家庭评估和支持以及社会服务转诊。在可能/可能患有严重 ME/CFS 的病例中，也观察到了类似比例的管理方法。
在疑似严重 ME/CFS 的 CYP 中，全面调查常常不完整，并且转诊和管理建议的实施情况不佳，特别是无法离开家的 CYP 的需求可能得不到满足。
