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Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric CFS/ME - Crawley et al Jan 2020

Discussion in 'PsychoSocial ME/CFS Research' started by Sly Saint, Jan 7, 2020.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking

    Andy, Barry, DokaGirl and 1 other person like this.
  2. Skycloud

    Skycloud Senior Member (Voting Rights)

    it’s actually not a bad thing to formally identify subjective outcome measures that are meaningful to patients lives.

    Edit bad joke deleted because it was bad
    Last edited: Jan 8, 2020
  3. strategist

    strategist Senior Member (Voting Rights)

    There doesn't seem to be anything obviously wrong, although there could be some bias in the selection of topics that patients were asked to rank, as well as other kinds of more subtle bias.

    So I asked myself what important topic might be missing here, and I think it's disbelief. This causes terrible suffering to patients. Not all of them, but a significant number.

    The outcome cards patients were asked to rank
    Maybe it's missing because the children that are facing disbelief are probably undiagnosed and not taken seriously and therefore cannot access healthcare or participate in research.

    Maybe it's missing because it's actually rare. But I doubt that. It seems to be a major theme for many patients.

    Perhaps it's missing because the disbelief is fueled by the BPS theories and activities and they don't want to acknowledge that they are harming patients by disseminating their narrative.
    Last edited: Jan 8, 2020
    Dolphin, rvallee, JohnTheJack and 4 others like this.
  4. Trish

    Trish Moderator Staff Member

    They recruited patients and parents from their outpatient clinic with mild to moderate symptoms. No severe or housebound patients included. Done by interview, mostly in patient's home. Only about 20 kids and 20 parents interviewed.

    This is how they diagnose CFS/ME:
    That doesn't seem to conform to any definition I'm aware of except perhaps the NICE guidelines.

    Note no mention of PEM. I've bolded their version of PEM in the list below that they were asked to rank. Note it describes it as 'tired after activity'. So not PEM.

    And here's the list they asked the kids and parents to put in order of things that matter most to them to improve:
    It's mildly interesting to see the differences in order by kids and parents, but the numbers are so small it could be just random fluctuations.

    Not surprisingly both parents and kids ranked the physical stuff highest - tiredness, symptoms, payback and crashing and what they were able to do.

    Perhaps that should tell them something. When someone is physically sick, they want to get better. The rest would sort itself out with a return to physical health.

    I can't help thinking they add the rest of the items to the list for 'quality of life' so they can use their 'therapy' to persuade people to put a more positive spin on the stuff like mood, hobbies and family life, so they can claim a patient has improved even if they are still just as physically ill.

    Edit: Crossposted with Strategist.
    Last edited: Jan 8, 2020
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  5. Trish

    Trish Moderator Staff Member

    Perhaps context is important to this one. They recruited families at a CFS outpatient clinic, so they were in a situation where they were getting diagnosis and having their symptoms taken seriously. These particular individuals may not yet have encountered the sort of 'disbelief' many of us suffer.
  6. Amw66

    Amw66 Senior Member (Voting Rights)

    This is where charities need to get involved in summarising flaws , usually silence reigns.
    Given the inadequate definition of PEM this is interesting but of little value.
    @Russell Fleming
    @Action for M.E.
    MEMarge, Skycloud and Trish like this.
  7. Unable

    Unable Senior Member (Voting Rights)

    Interesting that there are a mix of positive and negative outcomes in that list. I would find those very hard to rank at one time.

    I would also feel suspicious that the number of either positive outcomes, or negative outcomes, that I ranked near the top of my list, would somehow be interpreted in ways that I did not intend.

    Now I get that they are saying this is to inform future outcome measures, that would be important to young people, but now that they’ve collected this data, I wonder to what other use it might be put!

    Another quick thought, this would definitely be different depending on severity. Those who are mild/moderate may not rank “getting dressed and going out” that highly, if they are already doing that thing.
  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    It's not even NICE 2007. That guideline says:
    PEM is also listed as a mandatory part of their fatigue definition:
    That reads like more than just 'tired after activity'. Granted, it's a hodgepodge of descriptions, but it states that it's delayed and has slow recovery.
  9. rvallee

    rvallee Senior Member (Voting Rights)

    Of course. By someone competent and without an agenda.

    Still, there is 100x more benefit to devising a set of objective outcomes instead. This effort is just pointless in the grand scheme of things as it will never be used in a formal setting.
    MEMarge likes this.

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