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Effects of an educational video film in fatigued children and adolescents: a RCT

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 24, 2010.

  1. Dolphin

    Dolphin Senior Member

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    Ok, I know this isn't on CFS specifically but I thought it was interesting as it backfired on them: children who watched the video did worse. Would be interesting to see the full text.

     
  2. Esther12

    Esther12 Senior Member

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    Those are pretty big changes.

    3.3 times higher chance of missing over 50% of school? That's the most dramatic change an intervention for CFS has had that I remember. Shame it's the wrong way.

    In a way - doesn't this show that psycho-social factors that can be affected by this sort of training video are important, but that the current psycho-social models for CFS interventions are completely wrong?

    I suppose psycho-social factors will be important for all conditions. If you showed cancer patients a video insisting smoking with cancer is a great idea, they should avoid healthy food and only drink alcohol, that would have a negative affect too.

    edit: I'm assuming the training video was from the mainstream CBT/GET school of CFS techniques. Do you know if that's right? From a quick google of Bakker RJ it looks like he's associated with that school.
     
  3. Dolphin

    Dolphin Senior Member

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    I don't know too much about this study - it would be interesting to know more.
    Elisabeth van de Putte is from the CBT/GET school of thought. Her Ph.D. these can be downloaded from: http://igitur-archive.library.uu.nl/dissertations/2006-0921-200054/index.htm . In the Netherlands, Ph.D's are a collection of research papers so when you find them, you find these full papers that otherwise one might not get access to.

    I was always of the view that energy management is important in this illness - which would include bad management having a bad effect and good management helping. But good management in my opinion will often only get people so far esp. more long-term people. There is research which suggests people have a ceiling of activity.
     
  4. Dolphin

    Dolphin Senior Member

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  5. Esther12

    Esther12 Senior Member

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  6. Dolphin

    Dolphin Senior Member

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    Thanks

    The study itself is from pages 76-87. Take out the cover page and the references and its just over 7 pages plus tables. If I read it, might post comments.
     
  7. Esther12

    Esther12 Senior Member

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    I've gotten sucked in to it. I'm not up to much at the moment, but have just been skim reading it all. Here are the bits with info about the video:

    "In the absence of simple and effective interventions to prevent acute fatigue from becoming chronic for fatigued young people, who are seeking medical care, we developed a video film, focusing on those with the diagnosis Chronic Fatigue Syndrome. The aim of the film was to prevent fatigue becoming chronic in young patients by education about not medical explained fatigue in the earliest stage of their complaints. There are no other films with the same aim in the Netherlands, nor, as far as we know, somewhere else. We made the film to emphasize that their fatigue complaints are real, and to demonstrate how peers with CFS learned to cope with their limitations, and to participate in daily life. In the film young patients with CFS tell their stories. They give insight into the nature of the condition as well as into the way that they cope with it. We hypothesized that, compared to patients randomized to a “care as usual” control group, the patients, randomized to receive the video film plus care as usual, would demonstrate greater reduction in self-reported severity of fatigue and less school absence."

    "Intervention
    The video film was developed to present the diagnosis Chronic Fatigue Syndrome, as an explanation for ongoing fatigue, and the treatment options. The film starts with a conversation between two actresses, a fatigued adolescent and her healthy girlfriend, about the impact of fatigue on daily life. Subsequently, three young adolescents with CFS tell their stories about fatigue, the disabilities they had to deal with, and how they learned to cope and find their way to normal life. The film was based upon a script with leading questions and information on treatment approaches, mainly cognitive behavioural strategies. The adolescents told themselves how these strategies supported their recovery. Running through the different scenes, the patients are asked about the recognition of and coping with their own feelings of fatigue.
    The intervention is obtainable (in Dutch language) by writing to the first author."

    lol - when they add in extra data it's even worse - the vidoe group were five times more likely to end up with significant school absence:

    "Analysis of the outcomes of the patients of the video intervention group plus the last observations of the missed patients carried forward showed 3.6 (1.0;6.3) (p=0.008)) likert points less motivation, and a 5 times higher risk of becoming persistently fatigued with significant School Absence (OR 5.0 (1.3;19.1) p=0.018)."

    I'll paste over the discussion section in case anyone's interested - they decide that their attempt to intevene using the psycho-social model for CFS failed so spectacularly that it shows how right the psycho-social model for CFS must be:

    "Discussion
    The hypothesis of our study in children and adolescents with prolonged unexplained fatigue was, that labelling the fatigue symptoms as precursors of Chronic Fatigue Syndrome and showing the strategies to cope with the debilitating effects in a video film, might be a good instrument for the general paediatrician to prevent an unfavourable outcome. However, the outcome was contrary to this expectation. The patients who received the video film reported less motivation and a higher incidence of Persistent Fatigue with Significant School Absenteeism. The adverse effects of the intervention might be caused by the double message of the video film. It is possible that patients particularly picked up the first message, (i.e. fatigue complaints may be the result of a well-known condition: Chronic Fatigue Syndrome) as an explanation and legitimization of their fatigue complaints, but the second message (i.e. how to cope successfully with debilitating fatigue and unhelpful thoughts), did not get across.

    Adolescents might consider the medical label of unexplained symptoms, such as CFS, to be more serious than the same symptoms described using common language. The use of medical labeling can induce bias in perception by increasing the awareness of somatic symptoms, and may result in patients perceiving the condition as a disease.9 This perceiving may lead to a diminished ability or willingness to engage with normal activities in the face of feeling tired and/or unwell. On the other hand receiving a CFS diagnosis is an intervention in itself, that can bring an end to the burden of uncertainty and might have a positive effect upon fatigue and psychological aspects of well-being, such as more emotional stability and less psychological distress.10,11 This might promote acceptance of the status quo, but also carries the risk of the symptoms becoming self validating and self-reinforcing.12 We consider the adverse effects of the video film intervention as the result of these psychological processes, and that interpreting fatigue complaints within the label of CFS encouraged patients to perceive the fatigue as a socially accepted serious entity. Moreover it might have offered a socially sanctioned pathway for CFS illness behaviour such as reduced school attendance and decreased motivation. If this pathway has been appraised as personally relevant, the symptoms offered by the pathway might have been adopted as the forum for communication13 and may lead to transgression into the sick role and the development of an illness identity.

    To prevent patients following this pathway, more individual guidance is needed than the education that was offered by the video film.
    This study has limitations. The used guidelines for CFS are based on the CDC criteria. The substantial percentage of patients lost to follow up at 12 months, might bias the results. The reason of discontinuation of the follow up was in the first place the lack of willingness to complete anymore questionnaires, and not recovery. The lost to follow-up group had the same initial characteristics as the other patients. Analysis of the last observations carried forward showed the same outcome.

    So, we conclude that this particular video film intervention with the intention to inform about the diagnosis CFS and to coping behaviour, is not appropriate to prevent an unfavourable development in fatigued children and adolescents. The intervention even carries the risk of reinforcement of symptoms and legitimization of functional disabilities with less motivation and less school-attendance.

    This conclusion is a serious warning against medicalization by assigning the label of CFS without an adequate intervention to children and adolescents in the early stage of Prolonged Unexplained Fatigue. This video education / modelling film cannot be replaced by personal education about the bio-psycho-social aspects of fatigue and personal support in coping with limitations."

    Later on they explain that they think the video had a bad affect because the patients who watched it would have done the opposite of what was suggested:

    "We supposed that the use of medical labeling in the film might have resulted in patient’s perceiving the condition as a disease and this might have contributed to the reinforcement of symptoms and legitimization of functional disabilities. That might have paved the way to CFS illness behaviour, in stead of taking over strategies to cope as presented in the film. We concluded that the label of CFS confirmed the patient and his parents in their beliefs of a somatic disease, which had a negative impact."

    Other stuff from the report:

    They're keen on the term ‘Prolonged Unexplained Fatigue (PUF)’ - why did CFS people love playing with words so much?

    They go through a 'History of CFS' which seems cribbed from Wessely. Lazy scholarship there boys.

    They say CFS "might be the disturbed homeostasis within the psycho-neuro-immuno-endocrine network". A lot of the stuff here doesn't say much of interest, but manages to say it in a way that sounds significant anyway.

    They have some data showing an association between more computer games and less social exercise with poor outcomes for fatigue (I think computer games are bad for CFS - they get your brain thinking you're doing exciting active stuff, but your body's not doing anything in response). They emphasise that social exercise seems to be a factor, but solitary exercise does not.

    Lots of stuff about how patients and their families tend to be very respectable. I'd assume that this is because less respectable CFS patients tend to get fobbed off by their doctors - to get to a CFS clinic you need to be a bit sharp elbowed, and some research seems to bear this out. A few bits of this PHD seem poorly designed for accounting for this sort of error, and they don't always mention it in their discussions.

    They also said that neurological signs like blurry vision, poor memory etc, would good predictors for bad outcomes, but seemed to brush that off by saying that they were not focusing upon indicators that would require extensive testing like tilt table tests.

    Chapter seven mentions: "Although some of the participating adolescents had received CBT as part of psychological support, this did not influence outcome."

    Overall it wasn't that great a read imo.

    Thanks for digging it out though Dolphin - I should have made notes as I went along rather than trying to do it all at the end. I'm sure I missed out the good stuff.
     
  8. Snow Leopard

    Snow Leopard Senior Member

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    This result is bad..... It will be used to justify pushing kids into CBT, GET etc without a formal diagnosis.
     
  9. Dolphin

    Dolphin Senior Member

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    The video was supposed to be based on CBT attitudes. It would be weird spinning by anyone to try to justify that.
     
  10. Dolphin

    Dolphin Senior Member

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    Thanks for the analysis, Esther12.

    I just read Chapter 6 and am annoyed that they don't suggest that an alternative explanation could be given for the bad outcome: that the video contained bad advice.
     
  11. caledonia

    caledonia

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    This reminds me of the church programs that try to make gay people straight.
     
  12. ixchelkali

    ixchelkali Senior Member

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    Heaven forbid. We wouldn't want young CFS patients not to realize they are social pariahs with a trivial "entity." Gotta make sure they know they aren't socially accepted.

    Grrrr. Child abuse on a mass scale perpetrated by the medical profession.
     
  13. Snow Leopard

    Snow Leopard Senior Member

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    Esther12 already quoted such spin:

    "We supposed that the use of medical labeling in the film might have resulted in patient’s perceiving the condition as a disease and this might have contributed to the reinforcement of symptoms and legitimization of functional disabilities. That might have paved the way to CFS illness behaviour, in stead of taking over strategies to cope as presented in the film. We concluded that the label of CFS confirmed the patient and his parents in their beliefs of a somatic disease, which had a negative impact."

    Potential solution (for those already worshiping the church of psychiatry): avoid the labeling and push the CBT anyway. Rather than question whether it was the CBT style advice that was bad, as you rightly suggest.

    LOL. Also remember that psychiatrists tried it for many years and it was only the societal shift in values that made them stop.
     
  14. Dolphin

    Dolphin Senior Member

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    Ok, I see your point about pushing it on kids "without a diagnosis" (because they won't be rushing to diagnose them).
     

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