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

[Esther12]

https://blogs.bmj.com/bmj/2019/02/0...-producing-a-systematic-review-with-patients/

At least I wanted the promising trend of fatigue to be highlighted in the discussion. But the researchers wanted to discuss the low quality evidence and the need of better studies instead of discussing possible reasons and a promising trend.

When our review was submitted for publication, the editor requested that we did an updated search of the literature. This resulted in us finding further articles which confirmed what had been only a non significant tendency in the first search results, i.e. that multidisciplinary psychosocial interventions do have a positive impact on fatigue in cancer survivors.”

I was very happy for this result, because I believe it might bring hope for cancer survivors struggling with fatigue.

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

 

[Sly Saint]

At the multidisciplinary cancer rehabilitation centre I attended I got help to build up muscle strength and stamina after my treatment and psychosocial group discussions with peers helped me cope with my fatigue. Getting support alongside my peers was helpful for it made me realise that what I was going through was, in effect, a normal reaction to aggressive cancer treatment.

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.

 

[inox]

Huh. Wonder if Larun is open to this approach

The reference group were invited to decide on the research question, the inclusion criteria, and comment on the search strategy, the results, and the implication for practice. This was challenging for none of them had experience in conducting systematic reviews. In the event only one patient representative (Tone), no clinicians and four researchers from the reference group accepted the invitation to participate fully in this review. This small review group conducted and wrote an article based on the systematic review. [1] They met regularly between workshops and presented the progress of the systematic review to the reference group during workshops.

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.. ). 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