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Thread: Preferences for psychological interventions for MND

  1. #1

    Preferences for psychological interventions for MND

    This recently published paper lays the foundation for the COMMEND feasibility study and trial of which Iím a member of the steering committee.

    https://www.tandfonline.com/doi/full...1.2019.1621344

    It contains frank comments for MND sufferers and carers.

    Doug

  2. #2
    Forum Member Barry52's Avatar
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    Hi Doug,

    What stood out for me in the demographic was the high levels of academic achievement. Does this suggest a link with stress associated with senior positions in the workplace?

    Barry
    Iím going to do this even if it kills me!

  3. #3
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Barry52 View Post

    What stood out for me in the demographic was the high levels of academic achievement.
    Hi Barry,

    I wouldn't be too quick to come to that conclusion for 2 reasons;

    - the sample size of pwMND was 15, which is tiny.
    - the study advertised in part for participants. A certain cohort of people are more likely to participate, or to be interested, in research which leads to a statistical bias in educational attainment.

    Were the sample size much larger and the questionnaire asked to all who attended all MND Clinics on a certain day, to exclude geographical bias, I am sure the results would be quite different.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Yes, this paper simply describes the groundwork they did to see whether some sort of psychological intervention and therapy, e.g. ACT, might be beneficial if adapted to the needs of MND patients. They sought information from a very small, non-statistically representative group of patients and carers.

    The COMMEND study, currently underway in ten clinics around the country, involving delivery to a much wider spread of people, will be the acid test.

    Doug

  5. #5
    Forum Member Barry52's Avatar
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    Hi Ellie,

    I agree the sample is tiny and as Doug says the results following the trial may be more conclusive. I did consider this when typing my post and as with people who have led an active sports career they may find that stress is a trigger. Of course we need some level of stress in our life otherwise we would cease to function.

    I do hope the therapy will help some people deal with the diagnosis. I was concerned that the findings to date showed a reluctance for men to enroll.

    Love,
    Barry
    Iím going to do this even if it kills me!

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