Epidemiology of paediatric chronic fatigue syndrome in Australia, 2019, Knight et al

Andy

Andy

Retired committee member
Abstract
Objective To estimate the paediatrician-diagnosed incidence of chronic fatigue syndrome (CFS) in Australia, and describe demographic and clinical features, as well as approaches to diagnosis and management.

Methods The Australian Paediatric Surveillance Unit facilitates monthly national surveillance of uncommon conditions seen by paediatricians. Data from young people aged <18 years diagnosed with CFS were collected. Incidence was estimated based on new cases reported from April 2015 to April 2016.

Results A total of 164 cases of newly diagnosed CFS in young people aged 4–17 years were identified for inclusion. The estimated national incidence for children aged 4–9 years was 0.25 per 100 000 per annum. In children aged 10–17 years, the estimated incidence of paediatrician-diagnosed cases for Victoria (17.48 per 100 000) was substantially greater than other Australian states (range 1.31–5.51 per 100 000). Most cases were female and Caucasian, most commonly presenting after an infectious illness with symptoms gradual in onset. The majority were diagnosed at least 13 months after symptom onset. Symptoms, associations, investigations and management strategies were highly variable.

Conclusions Current findings suggest that, consistent with other countries, the Australian incidence of CFS in children aged <10 years is very low. In contrast, the national incidence of CFS in older children and adolescents (aged 10–17 years) is more unclear, with marked variability between geographical regions apparent. This may be due to variation in service accessibility and clinician understanding of CFS. Accordingly, national initiatives to improve equity of care for children with CFS may be required.
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Paywalled at https://adc.bmj.com/content/early/2019/02/23/archdischild-2018-316450
 
Trish said:
Not for me. In the UK it says I have to pay £27.60 for the full text.
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Oh, well. It's a public health library offering the service for me then due to the IP address. Thanks for letting me know.

Here's a quote I found interesting. CBT is less offered in Victoria than in other states. Wonder why? But the poor kids still have to go through sleep hygiene and GET..

Sleep hygiene was a treatment strategy recommended to almost all patients (95%), with graded exercise therapy, a modified school programme/home tutoring, pacing/balancing activities or symptom management with medication/supplementation frequently recommended. There were no significant differences in treatment strategies used for Victorian patients compared with those in other states, with the exception of cognitive behavioural therapy, which was reported to be less likely to be recommended in Victoria than in other states (Victoria: 19%, other states: 71%, χ2=44.50, p<0.001).
 
That’s a huge difference in CBT recommendation in Victoria and the only thing I can think of is that the Royal Children’s Hospital is in Melbourne and has a number of experts with active teaching roles.
 
It's a useful study. One problem is the commentary around rates of depression and anxiety in first degree relatives.

this study said:
Although the rates of a family history of depression, anxiety and CFS in the current study need to be interpreted cautiously as they are based on self-report from the family or young person to the paediatrician, other research has suggested a likely association with depression, anxiety and CFS in first-degree relatives.
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This makes it sound as though young people diagnosed with CFS are more likely to have first degree relatives with anxiety or depression than young people without CFS. But no comparable rates are given for young people without CFS. Here's some data on depression and anxiety rates from Beyond Blue - an Australian mental health charity:

Message: One in seven Australians will experience depression in their lifetime.
Breakdown: 15.0% of Australians aged 16 to 85 have experienced an affective disorder1* This is equivalent to 2.83 million people today.

Message: One quarter of Australians will experience an anxiety condition in their lifetime.
Breakdown: 26.3% of Australians aged 16 to 85 have experienced an anxiety disorder.2** This is equivalent to 4.96 million people today.​

Anxiety disorders and depression appear to be extremely common in the general Australian population. Therefore the rates of depression and anxiety disorders in first degree relatives of young people with CFS (that's the siblings and parents) don't look particularly interesting.

The rate of CFS in first degree relatives (13.4%) is pretty high though, given the much lower incidence in the general population.
 
To be fair @Hutan, a parent with a child with ME *is* more likely to be anxious and/or depressed if they are confused and scared about their child’s illness, fighting with disbelieving medical professionals and possibly also family members that there is anything wrong, and feeling helpless that they are unable to help their child. I actually think it would be pretty amazing for a parent with a child with ME in the acute phase to not have anxiety, depression or PTSD, though I think these would develop as a result of the illness in their child than be some sort of cause, which is just ridiculous.
 
Lidia said:
a parent with a child with ME *is* more likely to be anxious and/or depressed
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Anxious/worried/sad/upset are all different things to having an anxiety disorder or depression. But sure, we might hypothesise that a parent of a child with ME is more likely to have an anxiety disorder or have clinical depression as a reaction to the difficult situation. Or that the parent might actually have CFS but be misdiagnosed as having depression. Or we might hypothesise that the depression of a parent causes CFS in the child or that there is some common genetic cause for depression, anxiety disorder and CFS.

But the data from this study did not support any association between [CFS in the young person] and [anxiety disorder or depression in first degree relatives]. That's my point - there's no evidence here of a greater incidence of anxiety disorder or depression in the first degree relatives of young people with CFS.

And yet the paper doesn't say anything like that. Instead it talks about other studies that did 'suggest a likely association'.

And that non-result and obfuscation is given a place in the Discussion.
 
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I thought this was interesting:
The investigations that had the highest proportion of abnormal results were EBV serology (34%), allergy tests (33%), cytomegalovirus serology (25%), serum vitamin D (24%) and antinuclear antibodies (ANA) (23%).
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Tests that most commonly yielded abnormal results, such as EBV serology and the ANA test, are not recommended by the guidelines, yet were requested for many patients. It is possible that because the existing CFS guidelines are based largely on adult care, these tests were not included as they are more relevant to a paediatric population.
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I can't see why the ANA test would be more relevant to a paediatric population than an adult one. I think the finding that 23% of the young people tested are positive for ANA suggests that this test should be a guideline recommended test for both adults and young people.

Edit: The paper doesn't say what percentage of the young people had the ANA test though. That seems to be in an online supplement. Does anyone have access to that?
 
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