How is paediatric chronic fatigue syndrome/myalgic encephalomyelitis diagnosed and managed by paediatricians? An Australian Paediatric Research Network Study

Authors

  • Sarah Knight,

    Corresponding author
    1. Clinical Sciences, Murdoch Childrens Research Institute, Perth, Western Australia, Australia
    2. Victorian Paediatric Rehabilitation Service, The University of Melbourne, Perth, Western Australia, Australia
    3. Department of Paediatrics, The University of Melbourne, Perth, Western Australia, Australia
    4. The Melbourne School of Psychological Sciences, The University of Melbourne, Perth, Western Australia, Australia
    • Correspondence: Dr Sarah Knight, Clinical Sciences, Murdoch Childrens Research Institute, The Royal Children's Hospital, Flemington Road, Melbourne, Vic. 3052, Australia. Fax: +61 3 9348 1391 ; email: sarah.knight@mcri.edu.au

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  • Adrienne Harvey,

    1. Clinical Sciences, Murdoch Childrens Research Institute, Perth, Western Australia, Australia
    2. Victorian Paediatric Rehabilitation Service, The University of Melbourne, Perth, Western Australia, Australia
    3. Department of Paediatrics, The University of Melbourne, Perth, Western Australia, Australia
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  • Susan Towns,

    1. Discipline Paediatrics & Child Health, The University of Sydney, Perth, Western Australia, Australia
    2. Department of Adolescent Medicine, The Children's Hospital at Westmead, Perth, Western Australia, Australia
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  • Donald Payne,

    1. Department of Adolescent Medicine, Princess Margaret Hospital for Children, Perth, Western Australia, Australia
    2. School of Paediatrics and Child Health, The University of Western Australia, Perth, Western Australia, Australia
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  • Lionel Lubitz,

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

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

    1. Department of General Paediatric Medicine, The Royal Children's Hospital, Melbourne, Victoria, Australia
    2. Department of Adolescent Health, The Royal Children's Hospital, Melbourne, Victoria, Australia
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  • Sabine Hennel,

    1. Victorian Paediatric Rehabilitation Service, The University of Melbourne, Perth, Western Australia, Australia
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  • Harriet Hiscock,

    1. Clinical Sciences, Murdoch Childrens Research Institute, Perth, Western Australia, Australia
    2. Department of Paediatrics, The University of Melbourne, Perth, Western Australia, Australia
    3. Centre for Community and Child Health, The Royal Children's Hospital, Melbourne, Victoria, Australia
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  • Adam Scheinberg

    1. Clinical Sciences, Murdoch Childrens Research Institute, Perth, Western Australia, Australia
    2. Victorian Paediatric Rehabilitation Service, The University of Melbourne, Perth, Western Australia, Australia
    3. Faculty of Medicine, Monash University, Melbourne, Victoria, Australia
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  • Conflict of interest: Nil.

Abstract

Aim

The diagnosis and management of paediatric chronic fatigue syndrome/myalgic encepnalomyelitis (CFS/ME) represent ongoing challenges for paediatricians. A better understanding of current approaches at a national level is important in informing where research and education could improve treatment outcomes. We aimed to examine current diagnosis and management practices for CFS/ME by Australian paediatricians.

Method

An online survey was sent to members of the Australian Paediatric Research Network. The primary outcomes of interest included diagnostic criteria used, medical investigations and management practices in paediatric CFS/ME.

Results

One hundred seventy-eight (41%) of 430 eligible paediatricians responded, with 70 of the 178 (39%) reporting that they diagnose and manage CFS/ME as part of their practice. Medical investigations used for diagnosis were variable. Conditions that more than half of the paediatricians reported as commonly co-occurring (i.e. present in >50% of cases) included somatisation disorders, anxiety, depression and fibromyalgia. There was wide variation in behavioural and pharmacological management strategies but most paediatricians commonly engaged a school teacher, physiotherapist and/or psychologist as part of their management.

Conclusion

The diagnostic and management practices of paediatricians for CFS/ME within Australia vary widely. This likely reflects a paucity of paediatric-specific guidelines, together with limited evidence to guide best practice and limited training in this area. There is a need for guidance and education for the diagnosis and management of paediatric CFS/ME in Australia.

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