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Chronic fatigue syndrome in children: a cross sectional survey

Dolphin

Senior Member
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17,567
Free full text: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1719321/pdf/v088p00894.pdf

Arch Dis Child. 2003 Oct;88(10):894-8.

Chronic fatigue syndrome in children: a cross sectional survey.

Patel MX1, Smith DG, Chalder T, Wessely S.

Author information

Abstract*

BACKGROUND:

Chronic fatigue syndrome (CFS) in children is a controversial diagnosis with unclear aetiology, ill defined but likely increasing incidence, and debatable clinical management options.

However these children experience real and considerable suffering.

Appropriate research in this clinical population is sparse and usually occurs in tertiary referral units.

METHODS:

Cross sectional survey of 36 children attending a GP specialist interest clinic in southeast England.

RESULTS:

Patient sociodemographics and clinical morbidity were largely comparable to the literature from tertiary referral research centres.

Some prognostic indicators for adults did not readily transfer to this younger age group, although several children had a positive family psychiatric history.

Receiving treatment was associated with increased school attendance, but one third of subjects obtained no qualifications.

Return to normal health or significant overall improvement was reported by 29/36 subjects.

CONCLUSIONS:

The outcomes in this setting are favourable and comparable to those seen in a controlled setting; this study supports the concept that the prognosis for CFS in children and adolescents is generally good.

However, the impact of the illness is significant and this is perhaps most evident in terms of education.
Current methods of reporting educational outcomes in the literature are varied and merit development of standardised tools.

* I gave each sentence its own paragraph
 

Dolphin

Senior Member
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17,567
This is a cross-sectional study with no control group so isn't as interesting as a controlled trial.
For that reason, it isn't that important. But given I've read it, I thought I'd post some comments somewhere.

The abstract says:
Receiving treatment was associated with increased school attendance
One might think this means that they divided up who attended and who didn't, but they didn't do that. They simply listed the attendance rates before and after.

Education

In the week prior to first presentation at the clinic, the mean percentage of time spent at school was 29.9% (SD 33.9%, range 0–100%). Fourteen children (43.8%) informed us that they had not attended school at all in the week prior to presentation and only 12 (37.5%) stated that they had attended for more than 50% of the full school week. Sixteen children and their families applied for home tuition, of which 13 received some.Worrying about returning to school was highlighted by 26 (72.2%) children, and 22 (61.1%) felt that their school had been supportive.

At the time of the survey, 32 of 36 of the children (88.9%) were registered for full time education, of which 28 (77.8%) did actually attend. Receiving treatment was therefore associated with increased school attendance, but in the absence of randomisation, this cannot be considered as causal.

Patients could have improved due to the passage of time, or to getting a diagnosis and the benefits it brings, rather than specific effects from treatment.
 

Dolphin

Senior Member
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17,567
One might think from a lot of the results of this that the children are doing quite well. However, there is a big effect on education.

At the follow up telephone call GCSE results were discussed (pass grades A–E). The median number of passes was 3 (range 0–10). Sixteen (44.4%) achieved five or more passes and a further nine children (25%) achieved 1–4 passes, although not all of these were at a single sitting. Unfortunately, 11 children (30.6%) did not achieve any passes or did not even sit for their examinations. Twenty (55.6%) remained in full time education and five (13.9%) were in full time employment with a further one (2.8%) in part time employment. Three (8.3%) of the children were not working and were not in education, and there was missing data for the remaining seven (19.4%) children.

Here is the occupational classification of the parents:
Standard occupational classification of parents36
Level 4: 12 (33.3%)
Level 3: 15 (41.7%)
Level 2: 7 (19.4%)
Level 1: 2 (5.6%)

Occupations are classified in terms of their skill as defined by the nature and duration of the qualifications, training, and work experience required for competency in tasks of a particular job. Level 4 relates to professional occupations and managerial positions; level 3 includes technical occupations and a variety of trade occupations; level 2 includes machine operation, caring, and clerical occupations; level 1 includes cleaners, porters, and catering assistants.

The authors acknowledge some of the poor results in the discussion section:
Notably, school attendance prior to treatment was low and nearly half the children were not attending school at all. These findings are worse than those previously reported.12 13 16 19 One of the main difficulties here is that there is a lack of consistency across the literature in style and time parameters used for reporting school attendance and academic outcomes. In our study, home tutelage was received by 13 children; this in itself remains controversial,6 as most advocate a return to school as soon as possible.12 The issue of school refusal in children with CFS has been previously highlighted,3 and with 26 children worrying about returning to school, it is of concern that the return to school was possibly further prolonged. It has even been suggested that CFS could be conceptualised as a form of school refusal with the two conditions having essentially the same causes.6 In this study receiving treatment was associated with increased school attendance*. However, from the follow up telephone call we identified that a third of the subjects either obtained no passes or did not even sit for their examinations.
*Note again that this was simply a before versus after comparison: they didn't look at other patients and so can't really say that receiving treatment was associated with increased school attendance.

In our study the most striking finding was perhaps that less than half of the children were attending school in the week prior to presentation in the clinic. The possible impact of treatment on school attendance was favourable but still with varying degrees of time spent in school. Comparison with the literature was in general only possible with smaller scale studies and the method of recording data on education varied considerably. In real life, the outcome of education is generally seen as the degree of success at national examinations (GCSEs) and entry to further education. These are rarely reported in the clinical literature. It is therefore suggested that consistency be obtained by development of standardised scales for school attendance and educational outcomes. Only then can the true impact of CFS on education be properly examined.

The underlined bit is useful. Most studies use school attendance alone as a measure of the effect of an intervention on education. However, simply getting back to school doesn't mean one gets back to a good standard of educational achievement.
 
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Dolphin

Senior Member
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17,567
Fatigue Questionnaire.28 Eleven fatigue items are scored on a four-option continuum from “less than usual” to “much more than usual”. Ratings are coded using a bimodal method, with caseness being defined as aminimum score of 4 (range 0–11).
28 Chalder T, Berelowitz G, Hirsch S, et al The development of a fatigue scale. J Psychosom Res1993;37:147–53.
The Chalder Fatigue Questionnaire was used. Note how they used a threshold of 3/4 for caseness. The PACE Trial was initially going to do this but then switched to a looser definition in the end.

The scores were pretty good in this case although more than half are still "cases" of fatigue.
Total fatigue score (bimodal): 4.38
SD:3.61
Range: 0–11
Caseness: 19 (52.8%)

They make this rather annoying piece of speculation:
However, it has been further suggested that children and their parents might have unrealistic views of normative fatigue levels.20

It could also be said that patients may still feel more tired than healthy people but not recognise it, but I don't recall this ever being said (wasn't said in this paper anyway)
 

Dolphin

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17,567
Probably my final point: this was a survey sent out by a clinic. I recall one teenager once telling me that she told the clinic she was well to get away from them. Jane Colby told she has heard similar things. So it's possible patients may have said they were better than they were/said they were well, so they wouldn't be brought back for more "treatment".
 

Min

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UK
My friend's granddaughter is receiving treatment at one of Esther Crawley's clinics. She is becoming more and more ill as she is forced to attend school and forced to be active. Her parents were told to buy her a dog to make sure she gets up in the morning and goes for walks. It seems more like child abuse than medical treatment for a physical illness to me.
 

user9876

Senior Member
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4,556
Probably my final point: this was a survey sent out by a clinic. I recall one teenager once telling me that she told the clinic she was well to get away from them. Jane Colby told she has heard similar things. So it's possible patients may have said they were better than they were/said they were well, so they wouldn't be brought back for more "treatment".

I suspect it is quite common to overplay activity with these clinics since they aim to force activity. For example the comment about home tutoring being controversial. With the potential of threats from doctors you just exaggerate.