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2019 blog: Co-producing a systematic review with patients [Patient wanted more positive emphasis on psychosocial management for post cancer fatigue]

Discussion in 'Other health news and research' started by Esther12, Feb 26, 2019.

  1. Esther12

    Esther12 Senior Member (Voting Rights)


    I thought that this was of interest for showing how patients can end up pushing for a more 'positive' presentation of results if they've had a positive experience with a particular approach.

    This is the review: https://www.tandfonline.com/doi/full/10.1080/09638288.2018.1515265?scroll=top&needAccess=true
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    I think this is key.
    That they suffer from fatigue (in the generally understood meaning of fatigue) which is normal after illness, and in this case, aggressive cancer treatment. That talking with others going through the same experience helps (not sure why they keep putting psychosocial in front of everything). That the therapy may help cope with the fatigue, ie not 'cure' it.

    There has been similar rehab for people who have had strokes or heart attacks etc for a long time.
    But the emphasis on fatigue and psychosocial therapies (eg CBT) has become much more pronounced/emphasised.
  3. inox

    inox Senior Member (Voting Rights)

    Huh. Wonder if Larun is open to this approach ;)

    Note that Hilde Tinderholt Myrhaug is employed at the same place as Larun and Brurberg - the Norwegian Institute of public health, and both are Cochrane review authors.

    Some background for why this review (probably) happened. There's been some public debate/focus on how post-cancer fatigue isn't really talked about or handled in the health services here. I've got no inside knowledge, but from media the story is 'when the cancer is treated you're on your own' - more or less.

    Sunnaas rehabilitation hospital is a privatly owned hospital, specialised in rehabilitation (well, duh.. :p ). Dealing with the aftermath of surgery/illness/etc is usually done by private rehabilitation hospitals as this. They payed for this review to be done, and have two persons as co-authors.

    If there is nowhere else cancer survivours get to really talk about their experience, it's no wonder they feel the need for a 'psychosocial' management. Or really - any help and managament with re-adjusting to a new life, learning to live with fatigue etc.

    There are also rehabilitation stays for ME-patients, in similar places, with various approaches and quality. The Norwegian ME association did a survey, and found what @Sly Saint points to -many reported to have benefited from their stay, mostly interacting with other patients. Even if they at the same time reported to have detoriated during/after.

    I'd say the self-help bit, talking to others going trough the same is the main 'treatment effect'.

    Edit: added (forgotten) quote

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