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Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study
Alexander Peter Royston1,2, Sarah Burge3, Ilaria Idini4
1Centre for Academic Child Health, University of Bristol Medical School, Bristol, UK ar16623@bristol.ac.uk.
Insights
Investigations and management for severe pediatric myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are often incomplete. Healthcare professionals struggle to meet NICE guidelines, particularly for homebound children with ME/CFS.
Area of Science:
- Pediatric Health
- Neurology
- Immunology
Background:
- Severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) significantly impacts children and young people's (CYP) education, development, and quality of life.
- This condition in CYP is poorly understood, necessitating improved surveillance and management strategies.
Purpose of the Study:
- To explore the screening investigation, referral, and management of suspected severe ME/CFS cases in children and young people.
- To assess the extent to which care for confirmed severe ME/CFS in CYP meets National Institute for Health and Care Excellence (NICE) recommendations.
Main Methods:
- Utilized data from a British Paediatric Surveillance Unit (BPSU) study (February 2018-February 2019).
- Collected data via questionnaires from pediatricians and allied healthcare professionals in specialist ME/CFS centers for CYP meeting the surveillance case definition.
- Focused on confirmed, probable, and possible severe ME/CFS cases.
Main Results:
- 92 CYP with suspected severe ME/CFS were included; 33 confirmed, 59 probable/possible.
- Only 64% of confirmed severe ME/CFS cases were referred to specialist services.
- Management varied widely, with medication, activity management, and physiotherapy being most common; domiciliary support was low (12%).
Conclusions:
- Incomplete investigations frequently hinder the diagnosis of severe ME/CFS in CYP.
- Referral and management recommendations, particularly for homebound CYP, are poorly implemented.
- There is a critical need to improve the investigation and care pathways for pediatric severe ME/CFS.
Objective:
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.
Methods:
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.
Results:
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.
Conclusion:
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.
