Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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The utility of patient-reported outcome measures among patients with me/cfs

Discussion in 'Latest ME/CFS Research' started by snowathlete, Sep 8, 2016.

  1. snowathlete

    snowathlete

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    Qual Life Res. 2016 Sep 6. [Epub ahead of print]
    The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome.
    Murdock KW1, Wang XS2, Shi Q3, Cleeland CS3, Fagundes CP1,3, Vernon SD4.
    Author information

    Abstract
    PURPOSE:
    Debilitating fatigue is a core symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); however, the utility of patient-reported symptom outcome measures of fatigue for ME/CFS patients is problematic due to ceiling effects and issues with reliability and validity. We sought to evaluate the performance of three patient-reported symptom measures in a sample of ME/CFS patients and matched controls.

    METHODS:
    Two hundred and forty ME/CFS patients and 88 age, sex, race, and zip code matched controls participated in the study. Participants completed the Multidimensional Fatigue Inventory-20, DePaul Symptom Questionnaire, and RAND SF-36.

    RESULTS:
    The general and physical fatigue subscales on Multidimensional Fatigue Inventory-20, as well as the role of physical health on the RAND SF-36, demonstrated questionable or unacceptable internal consistency and problematic ceiling effects. The DePaul Symptom Questionnaire demonstrated excellent internal reliability, and less than 5 % of participants were at the ceiling on each subscale. The post-exertional malaise subscale on the DePaul Symptom Questionnaire demonstrated excellent clinical utility as it was able to differentiate between ME/CFS patients and controls (OR 1.23, p < .001) and predicted ceiling effects on other patient-reported outcome subscales. A score of 20 on the post-exertional malaise subscale of the DePaul Symptom Questionnaire optimally differentiated between patients and controls.

    CONCLUSIONS:
    Significant ceiling effects and concerns with reliability and validity were observed among Multidimensional Fatigue Inventory-20 and RAND SF-36 subscales for ME/CFS patients. The DePaul Symptom Questionnaire addresses a number of concerns typically identified when using patient-reported outcome measures with ME/CFS patients; however, an improved multidimensional patient-reported outcome tool for measuring ME/CFS-related symptoms is warranted.
     
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  2. Bob

    Bob

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    This seems like a useful study. I'm making a note of it for future reference. It's a shame that they didn't include the Chalder fatigue scale so it could get a good trashing.
     
    Webdog, Snow Leopard, anni66 and 7 others like this.
  3. Sean

    Sean Senior Member

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    One dodgy subjective self-report primary outcome measure down, one to go.
     
  4. user9876

    user9876 Senior Member

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    moderated with many others
    I think the CFQ is so bad they may have thought it wasn't even worthy of study.
     
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  5. Dolphin

    Dolphin Senior Member

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    I wonder is this a common definition of ceiling effects? I've never seen it before. I think if even a lower percentage are at the maximum it can still be a problem.
     
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  6. Dolphin

    Dolphin Senior Member

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  7. Dolphin

    Dolphin Senior Member

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  8. user9876

    user9876 Senior Member

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    Really a ceiling effect is a clipped distribution. There is some maths around clipped normal distributions but the equations are quite hideous.
     
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  9. Dolphin

    Dolphin Senior Member

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    Important to note if reading this paper
     
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  10. Dolphin

    Dolphin Senior Member

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    Probably not of interest to that many people, but these are commonly used questionnaires in ME/CFS especially the SF 36.
     
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  11. Dolphin

    Dolphin Senior Member

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    Again probably not of interest to that many people but I thought it was interesting to see the percentages at the ceilings for the various subscales. Again remember that the SF 36 scores are reversed to the normal scoring method.
     
    Last edited: Oct 15, 2017
  12. Dolphin

    Dolphin Senior Member

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    The only thing about this was that patients were required to have postexertional malaise so this finding is not that surprising (though healthy controls were not required not to have postexertional malaise).

     
  13. Snow Leopard

    Snow Leopard Hibernating

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    Beauty is in the eye of the beholder!
     
  14. RogerBlack

    RogerBlack Senior Member

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    Not forgetting of course:
    https://www.ncbi.nlm.nih.gov/pubmed/24064428
    Effects of Time Frame on the Recall Reliability of CFS Symptoms.

    Meaning several things, but amongst them a distortion of what 'normal' is is likely after a few months.
     
    Skycloud, Wonko and Snow Leopard like this.

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