Chalder & Godfry 2009 - CFS in adolescents: Do parental expectations of their child's IQ...

[Esther12]

Just a short thing because I keep seeing this paper being cited around the place as evidence that the parents of CFS patients tend to have unusually high and distorted expectations of their children, without the limitations of the study being explained.

It seems so common in CFS for weak a study to be published, and the paper will include provisos, but then go on to be cited uncritically in other papers and presentations.

It's not very interesting, but I thought I might as well post my notes up:

Chronic fatigue syndrome in adolescents: Do parental expectations of their
child's intellectual ability match the child's ability?
Emma Godfrey a, Anthony Cleare b, Alice Coddington b, Amanda Roberts a, John Weinman a, Trudie Chalder b,
⁎
a
Department of Psychology, Kings College London, London, UK
b
Department of Psychological Medicine, Kings College London, London, UK
Received 28 March 2008; received in revised form 16 February 2009; accepted 17 February 2009
Abstract
Objective:
This cross-sectional study aimed to measure the
discrepancy between actual and perceived IQ in a sample of
adolescents with CFS compared to healthy controls. We hypothe-
sized that adolescents with CFS and their parent would have higher
expectations of the adolescent's intellectual ability than healthy
adolescents and their parent.
Methods:
The sample was 28 CFS patients and 29 healthy controls aged 11–
19 years and the parent of each participant. IQ was assessed using the AH4 group test of
general intelligence and a self-rating scale which measured perceived IQ.
Results:
Parents' perceptions of their children's IQ were significantly higher for individuals with CFS than healthy controls.
Conclusions:
High expectations may need to be addressed
within the context of treatment.

It was not a prospective study, so the testing is only done once people already have CFS.

As it says: "Chronic fatigue syndrome (CFS) is characterized by prolonged physical and mental fatigue of at least 6 months' duration that severely affects functioning[1]"

It is not surprising that children who are suffering from a condition characterized by mental fatigue tend to under perform their parent's expectations on IQ tests more than health controls.

The paper actually says:

Ideally, CFS adolescents should be reassessed on recovery as it is possible that their IQ was affected by the illness and that parents' expectations are accurate.

Who knows what other confounding factors there may be - perhaps parents of ill children try to be 'supportive' by speaking more highly of them? Who knows. There's some reason to think that there's a problem with selection bias for patients who end up in tertiary care for CFS, and their results show that there is for for students/parents willing to volunteer for IQ tests at school. (edit: As Snow Leopard mentions beneath: "There is clearly heavy selection bias in the group. 21% of the CFS group and 52% of the control group tested in the top 10% (effectively 90th percentile IQ). You can't draw any conclusions when the groups are so heavily skewed like that.") This study doesn't really let us say much about anything.

Also:

Parental expectations of IQ were significantly higher for
patients with CFS than for healthy controls. However, the
discrepancy between expectation and actual IQ did not differ
significantly between groups (t=−1.7,P=.09).

Seperate minor point: This study reported higher (although really insignificant 7% vs 11%) levels of family history of fatigue in controls than patients. I've seen others talk about parental fatigue as a psychosocial risk factor (although that always seemed a bit risky considering our poor understanding of any genetic component).

Here's the Chalder slide which prompted this, but I've seen similar things around the place. (Compare and contrast with what's said in the paper: "However, the discrepancy between expectation and actual IQ did not differ significantly between groups")

https://docs.google.com/viewer?a=v&q=cache:JmsJB03WQOEJ:www.rcpsych.ac.uk/pdf/Chalder%20T.pdf &hl=en&gl=uk&pid=bl&srcid=ADGEESgV7Vm8xtaG6kaKTp08HEMAT8eRJZJI-6iLy8COa97xRQQPEgP4OHUsIm6RpCzMuQSBRbVuXDtNV8yPVygHuVXSHe0Yl7rGiSbjuB6X2g_F1po4ni1LY9vUWlwg2atWknfNOcEk&sig=AHIEtbRJpimAIgsKIwxt22wbZOBniWkJzA


There's a clearer example of her exaggerating the value of her work here: http://forums.phoenixrising.me/inde...o-educational-intervention-to-aid-reco.13326/

 

[Esther12]

Not to self: I want to check out this reference they used too. I just looked at the abstract, and I thought it might be less than convincing.

In keeping with this observation, Fry and Martin [14] found that both adolescents with CFS and their parents underestimated their current activity levels and had higher expectations of their post-CFS activity levels than was realistic for children of that age.
[14] Fry A, Martin M. Cognitive idiosyncrasies among children with the
chronic fatigue syndrome: anomalies in self-reported activity levels.
J Psychosom Res 1996;41:213
–
23.

 

[Snow Leopard]

There is clearly heavy selection bias in the group. 21% of the CFS group and 52% of the control group tested in the top 10% (effectively 90th percentile IQ). You can't draw any conclusions when the groups are so heavily skewed like that.

 

[Esther12]

Yeah.

With a lot of these sorts of CFS papers, I just find myself wondering "what question are they trying to answer? How could they think that this would move forward our understanding?" So often their studies' designs do not allow meaningful results to be gathered. Why do they bother? Just to get something published? On the assumption that they can spin shoddy results according to their own interests? Did they not realise these problems would prevent us from usefully interpreting their results?

A lot of the time they are just churning out papers which are worse than nothing.

 

[PhoenixDown]

Yeah.

With a lot of these sorts of CFS papers, I just find myself wondering "what question are they trying to answer? How could they think that this would move forward our understanding?" So often their studies design do not allow meaningful results to be gathered. Why do they bother?

Something to do with not wanting to turn their backs on ideas that they built their careers on.

 

[MeSci]

Something to do with not wanting to turn their backs on ideas that they built their careers on.

I think you have hit the nail on the head there.

 

[perovyscus]

So strange that I was reading this today and this thread comes up.

Genders are not matched, ages are not matched and the method of IQ testing shouldn't be used in literature. Furthermore, 52% of control groups tested in the A percentile, so why would the control parents overestimate their children's ability. Which parent was tested?

The letter method of IQ isn't "extensively tested" it's been replaced by a plethora of other tests, including WAIS, and these people are ostensibly adults anyways.

 

[Esther12]

The letter method of IQ isn't "extensively tested" it's been replaced by a plethora of other tests, including WAIS, and these people are ostensibly adults anyways.

Thank perovyscus. I don't know much about IQ testing, and hadn't thought about how important age is in understanding intelligence for teenagers. I did notice that the testing described seemed to be very brief, but chose not to look in to it. Even before all that, it seems that the results are really uninterpretable!

If this study does go on being cited and presented as important, it could be worth doing a more thorough examination of it. (Or if this is an area you're familiar with, and you fancy writing something up now, I'd certainly be interested).

 

[Tito]

From what I read, if I understand well, parents are asked to estimate their children's IQ and that number is then compared to the result of a proper IQ test the children take. But how do parents 'guess' their children's IQ. how can they say he/she has 120 and not 110? Or do they say that in comparison to their (perceived) IQ? If they say he/she is "very intelligent", it means 120, 140 or 160?

Beyond that point, I too find the subject of that research just bizarre... And the treatment will be: "parents, your child is not as clever as you thought. Stop showing interest and he'll get better"?... And then the parents will not seek medical advice any longer and guess what? "That patient is not coming to our clinic any longer, he must be cured"...

 

[Tito]

I found the study :
http://www.kcl.ac.uk/innovation/gro...ssets/2009/Godfrey2009IQinchildrenwithCFS.pdf

About the issue of parental assessment:

"This measure was constructed specifically for this research. Parents' expectations of their child's intelligence were assessed as a percentage using a visual analogue scale. Parents were told that 50% represented a child of average intelligence and that most children fell somewhere in the range of 25% to 75%. Thus parents placed an X at a point they felt was most appropriate on a 10-cm line which was marked with 0%, 50%, and 100% (at 0-, 5-, and 10-cm intervals). This was then scored by measuring in millimeters from 0 to the location of the X giving a score out of 100 equal to the number of millimeters. Adolescents then assessed their own intelligence using the same method as described above".

How bizarre that is... I had hoped that at least they would have asked for each IQ test question whether their child could have answered it or not, instead of rating their child against other children they may have heard about (ie. hypothetical children).

 

[Valentijn]

"This measure was constructed specifically for this research. Parents' expectations of their child's intelligence were assessed as a percentage using a visual analogue scale. Parents were told that 50% represented a child of average intelligence and that most children fell somewhere in the range of 25% to 75%. Thus parents placed an X at a point they felt was most appropriate on a 10-cm line which was marked with 0%, 50%, and 100% (at 0-, 5-, and 10-cm intervals). This was then scored by measuring in millimeters from 0 to the location of the X giving a score out of 100 equal to the number of millimeters. Adolescents then assessed their own intelligence using the same method as described above".

How bizarre that is... I had hoped that at least they would have asked for each IQ test question whether their child could have answered it or not, instead of rating their child against other children they may have heard about (ie. hypothetical children).

Yeah, I think it's about as useful as the result that something like 90% of therapists rate themselves "above average"

 

[Esther12]

Cross posting here, but I just started another thread on a paper which had a section that reminded moe of this thread: http://forums.phoenixrising.me/inde...n-be-a-nuisance-replication-is-science.22690/

Based on what we have started to surmise empirically, most of these claimed discoveries are likely to be either totally false preliminary observations (Ioannidis, 2005) or substantially exaggerated results (Ioannidis, 2008), a consequence of the extreme multiplicity of the probed data-space, the winner's curse (Zollner and Pritchard, 2007), and other biases. “Negative” results have almost disappeared from many scientific fields, especially those with “softer” measurements and more flexible analytical tools (Fanelli, 2010). Results procured by the most popular research sub-fields seem to have the lowest reliability (Pfeiffer and Hoffman, 2009).

 

[maryb]

And then the parents will not seek medical advice any longer and guess what? "That patient is not coming to our clinic any longer, he must be cured"...

We'd like the parents to make an appointment though.................

 

[perovyscus]

In case you're still interested, I've attached the study "Cognitive idiosyncrasies among children with the
chronic fatigue syndrome: anomalies in self-reported activity levels".

 

[Esther12]

In case you're still interested, I've attached the study "Cognitive idiosyncrasies among children with the
chronic fatigue syndrome: anomalies in self-reported activity levels".

Thanks for that. I've had this window open on my PC since you posted, and still have not got arround to reading it, but wanted to say 'ta' anyway.

 

[Esther12]

In case you're still interested, I've attached the study "Cognitive idiosyncrasies among children with the
chronic fatigue syndrome: anomalies in self-reported activity levels".

I'm not sure if I looked at this before. Stumbled upon it now, and posting some notes. Thanks again.

The main problem with this study is that there's no ill health control group. Parents speaking positively about their children's activity level before they got ill, or individuals doing the same about themselves, could be a common theme, or could be a reaction to the psychosocial approaches to CFS, and reflect a desire to show that they do want to be active rather than adopt the sickness role. The same potential biases could effect claims about desired activity levels.

Without trying to take account of these problems, it's difficult to see how any sort of conclusions can be drawn from this sort of study.

These sorts of things, and the prejudices of staff, can effect clinical observations:

Clinical observation indicates a
hard-driving, achievement oriented personality style to be associated with CFS [18,
19], which may lead to raised expectations of performance and of what is an acceptable
standard of functioning.

2 months of fatigue in teenagers is not that long, is it?

To be recruited into the study, a child must have been suffering from fatigue for at least 2 months

I see so much potential for bias, and the parents of those with CFS to attempt to display 'positivity' in the following questionnaire:

In addition to the objective activity measure, both the subject and a parent (usually the mother) were
given a booklet containing questions on their perception of the child's activity levels. All answers were
indicated as responses on a 100-point visual analog scale (VAS) for which careful instructions and practice
were given. Four questions were answered during the researcher's visit, with the VAS ranging from 0 "Not
at all active" to 100 "Extremely active":
1. Before your (their) illness, how active were you (was your child) compared to other healthy children
of the same age and sex?
2. How active are you (is your child) now, compared to other healthy children of the same age and sex?
3. When you get (your child gets) better, how active do you expect (them) to be, compared to other
healthy children of the same age and sex?
4. When you get (your child gets) better, how active would you like (them) to be, compared to other
healthy children of the same age and sex?
Questions for the healthy subjects and their parents were adapted by asking about levels of activity 6
months ago (rather than before illness) and 6 months in the future (rather than on recovery). The period
of 6 months was chosen as it was anticipated that this would be the minimum length of time for which
the patient group had been ill, controlling for retrospective report.

RESULTS
Summary
(1) There were discrepancies between the objective measure and subjective reports
of activity level in both the CFS group and the healthy group, for both children and
parents. However, the discrepancy was significantly larger for the CFS group, with
CFS children and their parents effectively underestimating the patient's objective level
of activity.
(2) Both CFS and healthy children aspire to be more active in the future than they
are at present. While the desired and expected levels of activity are similar for healthy
children and their parents, the CFS children show a significant difference between
expected postmorbid activity level and desired activity level. In other words, CFS
children aspire to higher levels of activity than they expect to attain, and this is reflected
in parental aspirations as well.

Figure 1 on page 6 makes it look as if the measures of activity counted what the children considered to be rest/inactivity as activity. Looking at those results, it seems very difficult to draw any conclusion.

Some more results:

​

Table II.-Mean (SD) ratings of past activity by child and parent
Group Child Parent
CFS 73.2 (19.8) 75.3 (19.6)
Healthy 62.9 (15.8) 67.4 (18.0)

​

​

​

The only interaction that reached significance was that
between Activity Type and Group (F[1, 17] = 7.36, p =0.015). A Dunn's multiple
comparison procedure showed that desired levels of activity were significantly higher
than expected levels of activity for the CFS group (p<0.01), but were not significantly
different for the Healthy group, (see Figure 2).

​

Table III.- Mean (SD) ratings of desired and expected future activity by child and parent
Desired Expected
Group Child Parent Child Parent
CFS 87.3 (14.0) 77.4 (13.8) 71.7 (16.9) 61.7 (16.5)
Healthy 80.9 (05.9) 75.9 (15.0) 71.2 (19.6) 72.4 (16.7)

​

​

​

(Pardon the funny formatting)

One other thing: Why don't people desire to e super-dooper active? What's bad about that? If we're talking about magic desires, then I would want pure pleasurable activity. If we're talking about desires tempered by reality, then I would expect CFS patients to want to be less active. It's not really clear to me from the way questions asked, exactly what was meant by them.

Despite the diagnostic criteria that children with CFS should have fatigue that is
severe enough to seriously interfere with normal activities, there was surprisingly no
significant difference between the monitor measures of activity levels in the two groups.
This is of interest in itself, as it suggests that the effect of fatigue on activity that is
reported to the clinician is perhaps more severe than actual activity level would suggest.
Indeed from the results of this study, children with CFS and their parents do appear
to report greatly reduced patient activity, to a degree in excess of that indicated by
objective measure. The result of this distorted perception might be to convince patients
(and their parents) that their illness is more severe than objectively observed behavior
would actually suggest.

They've got no ill-health control. So do not know (or have not reported) what sort of readings one should expect from those whose health does seriously interfere with normal activities.

Also, they did select the patients themselves, as teenagers who had reported two months of fatigue. There probably was considerable variability in the health of this group.

They do mention this on the final page, after a load of speculation about cognitive perpetuating factors:

At this point, it should be noted that there are difficulties in trying to measure
activity objectively [29, 30]. There is no published validity study of the Gaehwiler
activity monitor.

At this point? Maybe in the intro would have been better!

Oh, and they mention another point I'd made:

Finally, it should be noted
that, in principle, it is possible that results similar to those reported here may be
observed for patients with other disorders associated with inactivity and fatigue, and
such comparisons would be a valuable line for future research to take.

So after a load of meandering speculation, they basically admit that really their study is of little value.

Why is this still being cited?

Implications of this study for clinical practice are twofold. First, use of activity as
an outcome measure for treatment of CFS may be problematic if relying only on
patient report.

Reliable and objective measures of activity levels would be a preferable way of measuring outcomes.

Wrote this while half-asleep, so sorry if a bit confused!​

 

[alex3619]

I haven't read the entire thread yet, but I thought I would raise a point. IQ testing in CFS patients, even children? I have a university medal. I was a PhD candidate. Yet there are days when I probably function in the bottom five percent of the population ... no math skills, pathetic visual skills, almost no verbal skills. If parents rate their children's IQ on how they used to be, or were perceived to be, then they will always rate them higher than their current effective IQ. Its called brain fog for a reason.

I really wish they would do some work testing IQs on patients to see how much they drop with ME or CFS, and how much they drop during a crash, before they jump to unjustified conclusions.

PS Of course like all their studies, they seem to be really studying CF not ME.

 

[Snow Leopard]

None of these studies used unbiased or carefully controlled selection of participants and none have been replicated, so it is hard to draw any conclusions.

 

[Esther12]

This is what they Chalder and Godfrey 2009 paper cited the older paper for:

In keeping with this observation, Fry and Martin [14] found that both adolescents with CFS and their parents underestimated their current activity levels and had higher expectations of their post-CFS activity levels than was realistic for children of that age.

Even if we assume that the results from the study were accurate and meaningful, they did not show that.

Both CFS and healthy children rated themselves as being 'active' for less time than the activity monitor, and this could just indicate that the 'activity monitor' has a different view as to what being 'active' means than most children. Equally, the study did not show that the children and their parents had higher expectations for their post-CFS activity levels than was realistic for children of that age. Fry and Martin did not show what would be a realistic expectation or desires for children's post-CFS activity levels.

Actually, the results for 'expected' activity were:

CFS child: 71.7 (16.9)
CFS parent: 61.7 (16.5)
Healthy child: 71.2 (19.6)
Health parent: 72.4 (16.7)

So the parents had lower expectations, and the children had basically the same expectation.

They're just building 'evidence based' theories out of nothing? I was really knacked when I was reading this paper yesterday, so I'm a bit worried I went zzzzz for an important part of the paper, and missed the bit which showed it was of real value, but it looks like this is just another example of Chalder totally misrepresenting work in order to exaggerate her own expertise.

It reminds me of that Ioannidis paper I was reading yesterday:

Let us suppose that in a research field there are no true findings at all to be discovered. History of science teaches us that scientific endeavor has often in the past wasted effort in fields with absolutely no yield of true scientific information, at least based on our current understanding. In such a “null field,” one would ideally expect all observed effect sizes to vary by chance around the null in the absence of bias. The extent that observed findings deviate from what is expected by chance alone would be simply a pure measure of the prevailing bias.

...

Of course, investigators working in any field are likely to resist accepting that the whole field in which they have spent their careers is a “null field.” However, other lines of evidence, or advances in technology and experimentation, may lead eventually to the dismantling of a scientific field. Obtaining measures of the net bias in one field may also be useful for obtaining insight into what might be the range of bias operating in other fields where similar analytical methods, technologies, and conflicts may be operating.

http://forums.phoenixrising.me/inde...e-false-john-p-a-ioannidis.25381/#post-388736

 

[Esther12]

I'm just putting in the abstract of this from an old BABCP conference, along with one other:

Parental expectations of intellectual ability in children with chronic fatigue syndrome: match or mismatch

Alice Coddington, and Trudie Chalder, Guy’s, King’s & St Thomas School of Medicine, London.


Chronic fatigue syndrome is characterised by a sensation of persistent and debilitating fatigue of duration exceeding 6 months. This can result in a marked decline in the level of daily activity. In addition to physical symptoms patients report problems of attention, memory, learning and cognitive processing speed (Krilov, 1998). However research to date in adult samples has failed to find any significant impairment in IQ (Moss-Morris, 2000). Aetiology also remains unknown, and investigations have considered diverse possibilities. Research in adolescent samples is particularly limited despite growing prevalence in this group.

This cross-sectional pilot study focused on two hypotheses; firstly IQ will not be affected by CFS, and secondly that parental expectations of their child’s intelligence will be more unrealistic in CFS cases than healthy controls. The sample was 28 male and female CFS patients and 29 healthy controls aged 11-19 years and one parent of each subject. IQ was assessed using the AH4 group test of general intelligence and a self-ratings scale assessed perceived IQ. A battery of questionnaire measures controlled for possible confounding variables.

Results suggested that IQ was not affected by CFS. Furthermore it appears that parental expectations are significantly higher and more unrealistic for individuals with CFS that healthy controls. Additionally this relationship was strengthened when levels of fatigue, age and gender were controlled for. Unrealistic parental expectations will therefore be discussed as a possible aetiological factor in CFS.


Illness Beliefs in Young People with Chronic Fatigue Syndrome

Sarah Lambert, St Bartholomew’s Hospital, London and Trudie Chalder, Guy’s, Kings and St Thomas’ School of Medicine, London


Chronic fatigue syndrome (CFS) is a relatively rare condition in young people. Whilst the role of illness beliefs in adults with CFS has been investigated, very little is known about the beliefs of young people with CFS and the extent to which they influence fatigue, physical disability, or psychological adjustment. This study employed a cross-sectional design to examine beliefs about illness and activity in a group of 38 young people with chronic fatigue syndrome. Mother’s beliefs about their child’s illness were also examined. A small number of specific child and maternal beliefs about the illness and about the harmfulness of activity were associated with self-reported levels of fatigue, physical impairment, and psychological distress. Maternal beliefs were found to contribute significantly to levels of child self-reported functional impairment. Contrary to expectation, maternal beliefs did not make a significant contribution, over and above that made by the children’s own beliefs, to fatigue or psychological adjustment.