1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

A cost effectiveness of the PACE trial

Discussion in 'Latest ME/CFS Research' started by user9876, Aug 1, 2012.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    6,868
    Likes:
    6,146
    Here's the question on informal care. As one can see, it was filled in by the participant, not a family member or friend.


    This was asked before the trial started, at 24 weeks and 52 weeks.
    When one sees a figure of x number of pounds, it seems very exact. However, I would imagine people don't necessarily answer these questions that accurately - they can involve picking figures out of the air a bit. One could imagine that little biases could easily influence somebody from say saying they got 8 hours vs 10 hours help a week on average (or whatever).

    I don't know whether referring specifically to "fatigue" as the cause for the need for help could affect results at all? One might think the other option is CFS (or ME) but there is also simply not specifying the illness and see how much help people got.

    Again, as I think it was pointed out before, it comes back to actometers - it would have been more interesting to see their results. As well as possible inaccurate reporting, we also don't know whether people have lowered their standards/been more reluctant to look for help or, as Sam Carter suggested, some people could have been doing house work as their exercise (I know one case where this did occur with somebody in the GET group).
     
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,375
    Likes:
    5,862
    Thanks a lot for that Dolphin. I can't seem to stop myself from continually assuming that their figures are based upon better evidence than they are. Seeing the actual questionnaires really helps.

    I have no idea if this is true, but it seems perfectly plausible that:

    At the start of the trial, patients want to emphasise their problems to those assessing them, in order to ensure that they are taken seriously and helped (particularly with a diagnosis like CFS).

    Following treatments in which medical staff emphasised the importance of doing an activity like household tasks (GET) or some CBT equivalent, patients could well want to down-play any assistance they get out of a sense of pride.

    Without knowing how these sorts of factors affect questionnaire results, the results themselves are of little value.

    Anyone know if these questionnaires have been tested in other, similar circumstances? I googled the questions, and nothing came up.
     
    Dolphin likes this.
  3. Dolphin

    Dolphin Senior Member

    Messages:
    6,868
    Likes:
    6,146
    No problem. In case anyone missed it (nobody downloaded the file), the full protocol booklet with all the questionnaires can be downloaded from: t: http://www.mediafire.com/?92x9s920bsftyx0 .

    I have found it very useful to have this book as questionnaires can show up in all sorts of studies.

    This particular questionnaire is on page 168.
     
    Simon likes this.
  4. Esther12

    Esther12 Senior Member

    Messages:
    5,375
    Likes:
    5,862
    I did download it yesterday (or the day before). Not sure why it didn't register.

    It might be a long time before I get the chance to give it a proper look though.
     
  5. Dolphin

    Dolphin Senior Member

    Messages:
    6,868
    Likes:
    6,146
    No problem. It is a big document. But the questionnaires are all at the back in alphabetical order so fairly handy.

    EQ5d is on page 181.
     
  6. Dolphin

    Dolphin Senior Member

    Messages:
    6,868
    Likes:
    6,146
    I didn't find this piece that exciting: http://www.nhs.uk/news/2012/08augus...onic-fatigue-syndrome-not-cost-effective.aspx

    However, was interested in the second paragraph here:

    I am interested in this concept of patient preference. I don't know too much about it. It appears to me it could be a concept that could be useful for us.
     
    WillowJ likes this.
  7. WillowJ

    WillowJ Senior Member

    Messages:
    3,132
    Likes:
    2,807
    WA, USA
    This is a good point. Some people might reason that they get help because of pain, or because of PER, and so forth, and not specifically because of 'fatigue'.
     
  8. WillowJ

    WillowJ Senior Member

    Messages:
    3,132
    Likes:
    2,807
    WA, USA
    here is a great comment on the PLOS One article by TKindlon:

     
    Simon and biophile like this.
  9. alex3619

    alex3619 Senior Member

    Messages:
    7,662
    Likes:
    12,422
    Logan, Queensland, Australia
    How can he be so wrong? First, so far as I am aware we, as patients, all agree that adaptive pacing is of no use and probably dangerous. It seems he cannot tell the difference between pacing and adaptive pacing, which is the logical negation of pacing. This is a win for pro-PACE spin when a professor can't spot such simple errors.

    People are not reading the studies in detail. They are not investigating methodologies. They are not taking into account the masses of contrary evidence. They are not recognizing how so many terms have been redefined and then used as though the definition were the same as the original. This appears to include the media, doctors, and even professors. Its sad.

    Benefit from CBT and GET? The hard evidence says otherwise, in study after study, and this all agrees with patient claims. When are so called experts going to check the evidence before they make claims?

    Bye, Alex
     
    WillowJ, Bob and biophile like this.
  10. biophile

    biophile Places I'd rather be.

    Messages:
    1,399
    Likes:
    4,850
    [edit: made a few modifications to original post]

    I crunched a few numbers. [Table 3], CBT does little to reduce total societal costs vs SMC:
    SMC: £22,088 / (£12,001 x 2) = -7.97% reduction or £1,914 less than pre-randomization.
    CBT: £20,288 / (£11,333 x 2) = -10.49% reduction or £2,378 less than pre-randomization.
    According to the authors, there were no significant difference between any groups except for CBT vs APT.

    Meanwhile total health costs went up for CBT vs SMC:
    SMC: £1424 / (£770 x 2) = -7.53% reduction or £116 less than pre-randomization.
    CBT: £2322 / (£755 x 2) = +53.78% increase or £812 more than pre-randomization.
    The authors indicate that the difference is significant, although health costs are part of total societal costs. When looking at the above values, the extra cost of CBT is not clearly recovered by the decrease in total societal costs vs SMC and has no obvious advantage for overall service costs.

    Anyway, from the Discussion section:
    So back to [Table 3] for lost employment:
    SMC: £14,157 / (7,499 x 2) = -5.61% reduction or £841 less than pre-randomization.
    CBT: £13,958 / (7,978 x 2) = -12.52% reduction or £1,998 less than pre-randomization.

    Again to [Table 3] for informal care:
    SMC: £6,507 / (£3,732 x 2) = -12.82% reduction or £957 less than pre-randomization cost.
    CBT: £4,008 / (£2,601 x 2) = -22.95% reduction or £1,194 less than pre-randomization cost.

    While CBT seems to be better at reducing lost employment and informal care (the bulk of societal costs), these were selected from the overall service costs which show no obvious advantage for CBT when factoring in costs of therapy. "However, with the exception of a difference between CBT and APT, there were no significant differences in either lost work time or benefits between the treatments during follow up. In fact, benefits increased across all four treatments."

    From the section on Welfare benefits and other financial payments:
    Increased slightly? The combined proportion of participants receiving all types of financial payments (assuming no overlap) was SMC 37% to 60%, APT 50% to 68%, CBT 48% to 63%, GET 53% to 72%. If these figures were reversed and favoured CBT/GET I doubt they would be calling such differences "slight". And from the section on Methods:
    Wait, what? Although lost employment does not really change much, For some unknown reason their cost analyses did not take into account the increasing use of welfare benefits or other financial payments. This could have significant impact on cost-effectiveness, as benefits/payments cost a lot of money per person. Notice how all groups in the trial reported improvements in symptoms but also had increased usage of welfare benefits and other financial payments? I think I already highlighted the potential irony here for the underlying rationale of CBT/GET if these are associated.

    The cost-effectiveness of CBT and GET are minimal and fragile at best when it comes to overall service costs. I still haven't looked at the other cost-effectiveness analyses which AFAIK are not based around actual monetary exchange but based entirely around hypothetical value of QALY gained (EQ-5D), self-reported fatigue and physical function. As others have pointed out, there are potential flaws and biases in these measures as used in the PACE Trial.
     
    WillowJ, Dolphin, Simon and 1 other person like this.
  11. biophile

    biophile Places I'd rather be.

    Messages:
    1,399
    Likes:
    4,850
    LOL, of course the hyped news is going to be met with "interest" from Sharpe, he was a co-author of the paper and a principal investigator of the trial in question, and has invested part of his career and reputation on CBT/GET. I wonder if Sharpe met the data on poor employment/welfare/insurance outcomes with interest too? You know, the data that was downplayed in the paper and ignored during cost-effectiveness analyses (except for employment losses), while suspiciously remaining out of the news headlines and articles? Classic spin 101.

    Wasn't one of the recent failed FOIs (which included the request for data on deterioration rates based on the reverse criteria for improvement) denied because of a pending publication of another PACE paper? I see no such deterioration data in this new paper. Unless there is another PACE paper being peer-reviewed, we have been scammed once again.
     
  12. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Just choosing one for a moment. Does that mean that all the childless people in the study, circling 'No', will improve the results? i.e. Every 'No' counts as a positive i.e. my fatigue has reduced so much I don't need anyone to help me with those kids I don't have :)


    The 'good old' Huffington Post carried this tale of predictable euphoria: http://www.huffingtonpost.co.uk/201...ptoms-chronic-fatigue-syndrome_n_1732004.html posted here originally: http://www.mecfsforums.com/index.php/topic,13031.msg139651.html#new

    Chronic Fatigue Syndrome Treatments 'Good Value' (Can You Spot Signs? PICTURES)

    Straight off the bat we have the first set of signs:

    My comment is that the above means you are normal and stressed. I mean who the hell are these people? Eight hours sleep A NIGHT? If only. So that's it then folks. Way to reduce a condition to normality. No wonder we get ridiculed.
     
  13. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,410
    Likes:
    2,054
    Australia
    Just to clarify my previous comment, twenty or so thousand pounds was referring to the (substantial) total economic costs after receiving CBT/GET.

    Nevertheless, delivering CBT itself to all CFS patients in the UK would cost hundreds of millions of pounds (to apparently save tens of millions), up to a cost of billions if the 2.6% prevalence is to be believed.

    Hell, I hope that they do spend that money - then they will find out how serious CFS really is.
     
    WillowJ likes this.
  14. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    I gotta crunch these figures when I get some time. Thanks to all for posting what you have.
     
  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,868
    Likes:
    6,146
    Good analysis, biophile

    Just a small point on this: I'm not sure we can be 100% sure there is no overlap i.e. one person doesn't get more than one payment. However, adding them together gives the best indicator of total costs i.e. if some person, X1, gets Benefit A & B, while two people, X2 & X3, get benefits A& B respectively (i.e. one each), costs are likely similar (again we can't be 100% sure they're the same as there can be means testing, but it's likely the best we can do with the figures).
     
    biophile and Simon like this.
  16. Esther12

    Esther12 Senior Member

    Messages:
    5,375
    Likes:
    5,862
    I've not digested some of the above posts (looks like biophile did what I failed to, in going back to some raw data and really trying to get to grips with it, and that looks interesting).

    I want to quickly make a... Pro-PACE post:

    I'm perfectly happy to use the fact that more patients were on benefits after CBT/GET than before to attack the value of these treatments, and especially the misleading way in which their efficacy has been exaggerated... but it's probably actually a good thing.

    Lots of people with CFS are unable to get access to benefits which they deserve, and which will help them manage their condition. While some CFS centres refuse to help with these problems, it's probably a good sign for the way in which patients were treated that more of them ended up on benefits. (Although, this positive only counts once you've already accepted that the treatments aren't effective at improving capacity.)

    Okay, now that's done we can go back to slating them.
     
    WillowJ likes this.
  17. Dolphin

    Dolphin Senior Member

    Messages:
    6,868
    Likes:
    6,146
    It shouldn't because they also asked them before the therapies so such people presumably got no help then for their non-existent kids*

    * presuming people don't help patients with any imaginary kids. ;)
     
    WillowJ and Firestormm like this.
  18. Simon

    Simon

    Messages:
    1,522
    Likes:
    4,876
    Monmouth, UK
    Thanks for the analysis.

    Data Crunched for costs
    I now have the data in an excel spreadsheet with some bells and whistle:
    - 6 month pre-baseline data pro-rated to 12 months for comparison with post-baseline
    - subtotals eg for PACE vs other healthcare costs
    - separate table for pre vs post ,and all vs SMC

    But it won't let me upload (extension not allowed). People can PM with an email address if they want it edit: or get from google docs

    Couple of important points when using the table data to compare pre/post:
    1. Looks like you can't make exact direct comparisons between pre & post figures because they use a more sophisticated approach in their modelling:
    2. For the 12 month post-randomisation data, the healthcare totals slightly overstate the costs based on the indiviudal items (though 6-month data adds up perfectly). No idea why, but the GET & CBT figures are overstated by more than the SMC ones.
    more later
     
    biophile likes this.
  19. Dolphin

    Dolphin Senior Member

    Messages:
    6,868
    Likes:
    6,146
    Ok, don't think Barts should get any credit for this. There is a woman on MEA FB complaining how her service in Essex won't write any letters for benefit applications. They claim it's some sort of "conflict of interest".

    Some posts from her from the thread:

    • She mentions somewhere she may become homeless because of the policy.
     
  20. Bob

    Bob

    Messages:
    8,811
    Likes:
    12,206
    South of England
    This paper is confusing the hell out of me, and I haven't even begun to read it yet!!! :confused:
    I'm going to have a look at it today.

    I'm getting really irritated by the media reports that CBT and GET are the 'best' or 'most cost effective' therapies. They only compared them with SMC and APT. APT was a completely untested experimental novel therapy invented solely for use in the PACE Trial, so it's not surprising it was a complete failure. And SMC was the control group, so I'm not certain that it is appropriate to talk about the cost benefits of this group.

    Also, SMC just consisted of normal medical care, that you would expect to get from a GP, with a tiny bit of extra advice, and so these are costs which are going to be paid by the NHS whatever extra therapies are given. So CBT and GET should only be considered as supplementary treatments, on top of SMC, not as alternative costs. I don't know if they've taken this into account, but I don't expect that they have.
     
    WillowJ likes this.

See more popular forum discussions.

Share This Page