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Paediatric chronic fatigue syndrome: complex presentations and protracted time to diagnosis
Sarah Knight1,2,3,4, Adrienne Harvey1,2,3,5, Lionel Lubitz6
1Clinical Sciences, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.
Insights
Paediatric chronic fatigue syndrome (CFS) patients often experience prolonged symptoms and significant functional impairment before diagnosis. This study highlights key features of young CFS patients in Australia, informing future research and clinical practice.
Area of Science:
- Paediatric medicine
- Clinical audiology
- Public health
Background:
- Chronic fatigue syndrome (CFS) presents diagnostic and management challenges in paediatrics due to unknown causes and limited treatment research.
- Specialist clinics are crucial for addressing complex paediatric CFS cases.
Purpose of the Study:
- To describe the presenting characteristics of new paediatric patients at a specialist chronic fatigue clinic.
- To understand the initial clinical features and functional impact of CFS in young patients.
Main Methods:
- Retrospective review of medical records for patients attending a tertiary-level Australian children's hospital CFS clinic over 12 months.
- Standardized data collection template used, with functional impact assessed via school attendance based on NICE guidelines (2007).
Main Results:
- 99 patients reviewed; 59 diagnosed with CFS. Median age 15.4 years, predominantly female (two-thirds).
- Median time from symptom onset to diagnosis was 15.5 months.
- Common symptoms included fatigue, sleep disturbance, pain, post-exertional malaise, autonomic, and cognitive issues. Functional impact: 20% mild, 66% moderate, 14% severe.
Conclusions:
- Young individuals with CFS often face extended symptom duration and substantial functional limitations before accessing specialized care.
- Findings underscore the need for further research, practice improvements, and educational initiatives in paediatric CFS management.
Aim:
The diagnosis and management of paediatric chronic fatigue syndrome (CFS) remain ongoing challenges for paediatric clinicians, particularly given its unknown aetiology and the little research on effective treatments for this condition. The aim of this study was to describe the presenting features of new patients attending a specialist chronic fatigue clinic at a tertiary-level Australian children's hospital.
Method:
The medical records of all patients with an initial consultation at the chronic fatigue clinic over a 12-month period were reviewed using a standardised data collection template. Functional impact was based on school attendance and classified according to the National Institute of Health and Clinical Excellence guidelines (2007).
Results:
A total of 99 patients attending the clinic were identified. Of these, 59 were diagnosed with CFS. Median age was 15.4 years with almost two-thirds of patients of female sex. Median time between symptom onset and diagnosis was 15.5 months. There was a high occurrence of fatigue, sleep disturbance, pain, postexertional malaise, and autonomic and cognitive symptoms in the group. The functional impact of CFS was classified as mild for 20%, moderate for 66% and severe for 14% of patients.
Conclusions:
Most young people diagnosed with CFS experience symptoms for a protracted period, with considerable functional impact prior to initial tertiary service consultation. This audit has identified important areas for research, practice development and education in relation to the management of patients with CFS.
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