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Paediatric chronic fatigue syndrome: Complex presentations and protracted time to diagnosis

Authors

  • Sarah Knight,

    Corresponding author
    1. Clinical Sciences, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
    2. Victorian Paediatric Rehabilitation Service, Monash Children's, Melbourne, Victoria, Australia
    3. Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia
    4. Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, Victoria, Australia
    • Correspondence: Dr Sarah Knight, Critical Care and Neurosciences, Murdoch Childrens Research Institute, Royal Children's Hospital, Flemington Road, Parkville, Vic. 3052, Australia. Fax: 61 3 9345 5544; email: sarah.knight@mcri.edu.au

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  • Adrienne Harvey,

    1. Clinical Sciences, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
    2. Victorian Paediatric Rehabilitation Service, Monash Children's, Melbourne, Victoria, Australia
    3. Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia
    4. Victorian Paediatric Rehabilitation Service, Royal Children's Hospital, Melbourne, Victoria, Australia
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  • Lionel Lubitz,

    1. Department of General Medicine, Royal Children's Hospital, Melbourne, Victoria, Australia
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  • Kathy Rowe,

    1. Department of General Medicine, Royal Children's Hospital, Melbourne, Victoria, Australia
    2. Department of Adolescent Health, Royal Children's Hospital, Melbourne, Victoria, Australia
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  • Colette Reveley,

    1. Department of General Medicine, Royal Children's Hospital, Melbourne, Victoria, Australia
    2. Department of Adolescent Health, Royal Children's Hospital, Melbourne, Victoria, Australia
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  • Frederike Veit,

    1. Department of Adolescent Health, Royal Children's Hospital, Melbourne, Victoria, Australia
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  • Sabine Hennel,

    1. Victorian Paediatric Rehabilitation Service, Monash Children's, Melbourne, Victoria, Australia
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  • Adam Scheinberg

    1. Clinical Sciences, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia
    2. Victorian Paediatric Rehabilitation Service, Monash Children's, Melbourne, Victoria, Australia
    3. Victorian Paediatric Rehabilitation Service, Royal Children's Hospital, Melbourne, Victoria, Australia
    4. Faculty of Medicine, Monash University, Melbourne, Victoria, Australia
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  • Conflict of interest: There are no conflicts of interest to disclose.

Abstract

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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