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Assessing severity and self-report treatment outcomes in children with CFS/ME

Discussion in 'Latest ME/CFS Research' started by Simon, Mar 27, 2014.

  1. Simon

    Simon

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    Child Care Health Dev. 2014 Mar 24. doi: 10.1111/cch.12135. [Epub ahead of print]
    Assessing severity of illness and outcomes of treatment in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): a systematic review of patient-reported outcome measures (PROMs).
    Haywood KL1, Collin SM, Crawley E.

    Abstract

    Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME) in children is characterized by persistent or recurrent debilitating fatigue which results in a substantial reduction in activity.

    There is a growing interest in the use of questionnaires, or patient-reported outcome measures (PROMs), to assess how patients function and feel in relation to their health and associated healthcare. However, guidance for PROM selection for children with CFS/ME does not exist.

    We reviewed the quality and acceptability of PROMs used with children with CFS/ME to inform recommendations for practice. We conducted a systematic review of PROMs completed by children with CFS/ME. The quality of the evaluative studies and the reviewed measures were assessed against recommended criteria using an appraisal framework and the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. We sought evidence of measurement (reliability, validity, responsiveness, interpretability, data quality) and practical properties (acceptability, relevance, feasibility).

    Sixteen articles were included in the review, providing evidence of reliability and/or validity for 13 PROMs. Of these, five were child-specific (one health-related quality-of-life; four emotional well-being) and eight were not (four emotional well-being, three fatigue-specific; and one generic).

    All measures had limited evidence of measurement properties and no evidence of practical properties. Recommendations for patient-reported assessment are difficult to make because of limited evidence of the quality and acceptability of PROMs for children with CFS/ME.

    The appraisal method highlighted significant methodological and quality issues which must be addressed in future research.

    There is a lack of qualitative evidence describing the outcomes of healthcare that are important to children with CFS/ME, and the relevance or appropriateness of available measures.

    Future PROM development and evaluation in this group must seek to involve children collaboratively to ensure that the outcomes that children care about are assessed in an acceptable way.
    --------------

    I like this study for two reasons. First, using outcome measures that matter to patients is very important in my view and rarely happens. For example, the Chalder Fatigue Scale uses questions dreamt up by Simon Wessely and did not attempt to involve patients to check the scale actually measured fatigue in a way that was relevant to people with ME/CFS. That's not the only problem with the Chalder scale, but it's a big one.

    Secondly, Kirstie Haywood has already published a brilliant piece of work assessing ME/CFS PROMS (patient-reported outcome measures) across the board (ie inc for adults), that was exceptionally rigorous. This concluded that not only did most measures fail to ensure they were measure outcomes that matter to patient, they were also poorly designed scales (ie didn't measure the right thing, and measured the wrong thing badly).

    While I also believe we need to use objective measures to assess treatment outcomes, eg activity-measuring devices like actomters, I think focusing on outcomes chosen by patients is important too eg fatigue and cognitive functioning might be captured by a social functioning outcome measure.
     
    Last edited: Mar 28, 2014
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  2. Cheshire

    Cheshire Senior Member

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    They use the very same tools that will never make them change their point of view, it's the snake that bites its own tail. A "growing interest", (sight...) we're not finsihed with all that crap...
     
  3. Simon

    Simon

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    Continuing to plough my lonely furrow here. The user-friendly summary at the end says:
    Further highlights from the full text:

    To clarify, this study focuses on studies that evaluated the PROMs in children with CFS, while the previous review had looked at studies using adults. Though in many cases the same scales in both studies eg the Chalder Fatigue scale has been tested in both children and adultts.

    No evidence that current PROMs measure the right thing
    This is the killer line in the review:
    In other words, the research reviewed on these questionnaires hadn't shown they are measuring what is actually meaningful or relevant - which you might actually expect to be the starting point for choosing a PROM. If it isn't measuring the right thing, the statistical qualities of a questionnaire is immaterial.

    The paper comments on the emphasis in literature on emotional measures ahead of anything else eg functioning:
    Pointing the way ahead?:
    There's a lot of detail about specific scales evaluated eg CIS-20 and Chalder Fatigue Scale but unless there is a clamour for more I will leave it there.
     
  4. Esther12

    Esther12 Senior Member

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    Seems like a decent paper that points out a lot of things that have already been said on here.

    Rather wish these problems had been explored before 20 years of research and clinical practice was based on poorly thought through outcome measures though.

    re clamour for more: I don't want to give you chores, but if you thought that they had anything interesting to say about the more commonly used scales (Chalder Fatigue), I'd be interested.
     
    Last edited: Mar 27, 2014
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  5. Dolphin

    Dolphin Senior Member

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    My guess is that a child would be unlikely to consider themselves recovered unless they could take part in high intensity activities like sports and dancing.

    (I don't think adults are really recovered until they do them either but I think a child should be able to do them even more)
     
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  6. Dolphin

    Dolphin Senior Member

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  7. Dolphin

    Dolphin Senior Member

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    Last edited: Apr 7, 2014
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  8. Dolphin

    Dolphin Senior Member

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  9. Dolphin

    Dolphin Senior Member

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  10. Dolphin

    Dolphin Senior Member

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    Aside: I don't recall noticing changes to the SF-36 PF between version 1 and version 2. Anyone know what the changes were?
     
  11. Esther12

    Esther12 Senior Member

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    I don't see why that would just be a problem for children, especially if adults were going through a course of CBT intended to encourage them to view their symptoms as normal.
     
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