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March 18, 2024TOPLINE:
In Britain, many children and young people with severe myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) are under-assessed and under-treated.
METHODOLOGY:
- A prospective, cross-sectional British Paediatric Surveillance Unit study.
- Participants were 92 children and young people with confirmed or suspected ME/CFS, referred from two centres between February 2018 and February 2019.
- Authors assessed how closely their treatment adhered to the National Institute for Health and Care Excellence recommendations.
TAKEAWAY:
- Among 33 children with confirmed severe cases, 21 had been referred to specialists; four had received no treatment.
- Of those 33 children, 12% received home assessments and support and 6% were referred for social services.
- In all, 67% got medication, 61% were using activity management, and 61% were receiving physiotherapy.
- Patients with suspected ME/CFS, 16 of whom had not received complete blood testing, received similar amounts of treatment or management.
IN PRACTICE:
“This suggests patients may be receiving suboptimal care since alternative diagnoses are not appropriately excluded and specialist care is not provided,” the authors wrote. “The scarcity of domiciliary visits is [also] of concern for this patient group.”
SOURCE:
The study was conducted by a team in Bristol and appeared in BMJ Paediatrics Open.
LIMITATIONS:
Authors encountered problems reaching clinicians and patients, as the study was conducted early in the COVID-19 pandemic. Cases may have been missed.
DISCLOSURES:
The study was funded by the National Institute for Health Research and the Royal United Hospitals Bath NHS Foundation Trust. The authors reported no conflicts of interest.