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Importance of clarifying patients' desired role in shared decision making to match their level of en

Discussion in 'Other Health News and Research' started by Dolphin, Dec 18, 2013.

  1. Dolphin

    Dolphin Senior Member

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    (Not an open access paper unfortunately. Probably a minority interest. I'm not sure I've anything earth-shattering to post but will post a few short extracts)

    http://www.bmj.com/content/347/bmj.f7066
    Last edited: Dec 18, 2013
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  2. Dolphin

    Dolphin Senior Member

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    Quite a reasonable percentage of proponents of CBT/GET for ME/CFS don't want to give patients choices from what I can see. This particularly comes through if they're working for insurance companies where claims are denied if patients haven't done CBT or GET. But it is also evident in other things they say and do.

    I think the papers and information on the research on patient preferences could be useful so patients aren't coerced into treatments so have started reading a bit on it. So that's the main reason I'm interested.

    I think CBT and GET are good examples of this. One obvious trade-off/possible harm is in terms of the time and energy required to follow such regimes. Going for walks can mean one has less time and in particular energy for other activities. This is probably difficult for most people but can be particularly difficult for many people who are juggling other responsibilities e.g. work, studying, child-care, etc.

    Then there is the risk of relapse and deterioration from CBT and GET.

    So I believe shared decision making should be used much more in the ME/CFS realm.

    Last edited: Dec 18, 2013
  3. Dolphin

    Dolphin Senior Member

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    The bolded bit is something I can relate to. And because on ME matters, I tend to know what I want and don't want, for anything not related to ME, both because of my aforementioned strong opinions on some aspects of health (i.e. the ME ones) and my relative lack of knowledge of other aspects of medicine, I can feel a bit "vulnerable and reluctant to express concerns".
    Last edited: Dec 18, 2013
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  4. Dolphin

    Dolphin Senior Member

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    This contrasts with the situation a lot of people can be faced with, particularly in some countries, where often no choices will be offered apart from graded activity programs.

    I think this can happen in situations where graded activity-oriented approaches are being offered.
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  5. Dolphin

    Dolphin Senior Member

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    I think relatively few clinicians seem to recognise the underlying trade-offs between options (i.e. what I mentioned previously that graded activity programmes (e.g. CBT, GET, etc.) can use up value energy patients may not easily be able to spare.

    Similarly, as I said previously, treatment options are often not given (e.g. energy envelope/pacing type strategies).
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  6. Esther12

    Esther12 Senior Member

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    Ta D. I thought that was interesting, and good it was published in the BMJ.
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  7. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    Agreed ... I think a big part of the problem is that the doctors offering us treatments do not know what the options are, or the consequences of those options. To a large extent, researchers and "experts" are doing the same thing to our doctors which our doctors are doing to us - withholding the info needed to make a choice and simply telling us only what they think is best for us to know.
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