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How is paediatric CFS/ME diagnosed & managed by paediatricians? Australian Paediatric Research Study

Dolphin

Senior Member
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17,567
(Not open access) http://onlinelibrary.wiley.com/doi/10.1111/jpc.12677/abstract

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

J Paediatr Child Health. 2014 Dec;50(12):1000-7. doi: 10.1111/jpc.12677. Epub 2014 Jul 10.

Knight S1, Harvey A, Towns S, Payne D, Lubitz L, Rowe K, Reveley C, Hennel S, Hiscock H, Scheinberg A.

Author information

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.

© 2014 The Authors. Journal of Paediatrics and Child Health © 2014 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

KEYWORDS:

adolescent; chronic fatigue syndrome; chronic illness; general paediatrics

PMID: 25041646 [PubMed - in process]
 

Dolphin

Senior Member
Messages
17,567
Can't say I found this particularly exciting.

An annoying thing is what is practised was compared with:
Toulkidis V, Loblay R, Stewart Get al. Chronic Fatigue Syndrome: clinical practice guidelines 2002. Produced by a working group convened under the auspices of the Royal Australasian College of Physicians.Med. J. Aust.2002;176: S23–56
These are guidelines that are not popular with a lot of patients. They basically take the biopsychosocial view of the illness, recommending CBT and GET, etc.
 

Dolphin

Senior Member
Messages
17,567
This extract gives an idea where they're coming from:

Management and treatment

The recommended management of CFS/ME involves a multidisciplinary approach. 21

In line with this, the paediatricians in the current study commonly reported the engagement of other disciplines, particularly psychologists and physiotherapists, as part of their management approach.

Liaison with schools (also described as a critical component of management in guidelines) was reported to be common practice among the majority of paediatricians. Interestingly, most paediatricians reported recommending GET as a common part of their practice.

Despite the demonstrated efficacy of GET in adults with CFS/ME, 48 there is insufficient evidence for its efficacy in children and adolescents. 19

Future studies aimed at providing evidence for the efficacy of GET in children and adolescents with CFS/ME are therefore crucial.

There is emerging evidence that a CBT-based approach is effective in children and adolescents with CFS/ME,19 and it was encouraging to see that CBT formed a common part of management for the majority of paediatricians in the current study.

A range of other recommendations incorporated in the guidelines (e.g. sleep hygiene advice and symptom management with medication) formed part of the management of CFS/ME by most paediatricians in the current sample.

While there was wide variation in the management practices, the particular strategies used did not appear to relate to the frequency at which paediatricians made CFS/ME diagnoses.

They do sort of recommend GET as they say it is recommended in current guidelines in Table 6 when listing therapies (slightly oddly CBT isn't marked as such even though they recommend it a few times in the text). "Diet changes/nutritional advice" and "Bed rest" are the two other approaches in Table 6 that they report some clinicians used but which are not recommended by current guidelines (they don't recommend them either).
 

Dolphin

Senior Member
Messages
17,567
They don't really talk about biopsychosocial explanations explicitly but as I say they promote CBT and GET.

Kathy Rowe (one of the authors) seems to be popular with one or more ME/CFS groups in Australia but I would be concerned if she became too influential esp. in the care of adults. Her approach seems to be mainly about management and CBT-lite. She generally doesn't seem to talk much about physical findings or drugs aimed at dealing with causes. A lot of children get better anyway if they get diagnosed and are not pushed too hard which is probably why her results are reasonable. However, I imagine the same approach would be far less effective e.g. one would see far fewer people getting back to good functioning with adults.
 
Last edited:

Denise

Senior Member
Messages
1,095
They don't really talk about biopsychosocial explanations explicitly but as I say they promote CBT and GET.

Kathy Rowe (one of the authors) seems to be popular with one or more ME/CFS groups in Australia but I would be concerned if she became too influential esp. in the care of adults. Her approach seems to be mainly about management and CBT-lite. She doesn't seem to talk much (ever) about physical findings or drugs aimed at dealing with causes. A lot of children get better anyway if they get diagnosed and are not pushed too hard which is probably why her results are reasonable. However, I imagine they same approach would be far less effective e.g. one would see far fewer people getting back to good functioning with adults.



Thank you for digging into this for us!
At the IACFS/ME conference in March 2014, they spoke about this study:
http://www.iacfsme.org/DesktopModules/DigitalDownload/2014Syllabus25.pdf