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PACE Trial team won't release data they've already published in graph form

seaturtle

seaturtle

Messages
32
First of all, all of the data below needs to be double-checked because it's been a while since i studied the papers, and there may be mistakes in both interpretation of, and copying of, the data. So please don't rely on the data that I've presented. If anyone spots any glaring or subtle errors, then please let me know, and i'll amend.
seaturtle said:
It's worth noting that, for CBT, there were absolutely no objectively-measured improvements in the PACE trial:

Employment outcomes - no improvements.
Welfare benefit claims - no improvements.
Private insurance claims - no improvements.
Physical disability (6 minute walking test) - no improvements.
Fitness (step test) - no improvements.
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Mark said:
It might be worth setting out the before and after numbers, from the relevant papers, on those particular stats. Someone might be able to make a good leaflet, or graphic, or something, out of that..."CBT: Before and after..."
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It's a nice idea, but it's actually quite complicated, for reasons I'll outline below. Also, some data, including the important 'adjusted' comparisons to the SMC control group, haven't been released. The complexity of the data, and the fact that some data is missing, means that it wouldn't be possible to present the data in a simple or attractive form.

Here's why...
  • Employment outcomes - In the CBT group, there were some improvements in hours worked but it wasn't a meaningful improvement when compared with the other groups. "There was no clear difference between treatments in terms of lost employment." (Adjusted comparison to SMC control group is not given.)
  • Income benefits - In the CBT group, a higher proportion of participants were receiving these benefits at the end of the trial than at start. So outcomes deteriorated in the CBT group, but adjusted comparison to SMC control group is not given.
  • Illness/disability benefits - In the CBT group, a higher proportion of participants were receiving these benefits at the end of the trial than at start. So outcomes deteriorated in the CBT group, but adjusted comparison to SMC control group is not given.
  • Income protection schemes or private pensions - In the CBT group, a higher proportion of participants were receiving these benefits at the end of the trial than at start. So outcomes deteriorated in the CBT group, but adjusted comparison to SMC control group were not given.
  • Physical disability (6 minute walking test) - In the CBT group, participants were able to walk further at 52 weeks than at baseline in absolute terms, but for the important adjusted comparison with the SMC control group, there was a 1.5m deterioration in mean distance achieved.
  • Fitness/Conditioning (step test) - Exact data not given.

And here's some data (All for the CBT group):
  • Lost employment - Days lost from work - 170.6 (pre randomisation period - 12 month equivalent) 151.0 (post randomisation period - 12 month). "There was no clear difference between treatments in terms of lost employment." (Adjusted comparisons with SMC not given.) Table 2 [1].
  • Income benefits - Percentage receiving payments - 10% (6-month pre-randomisation period) 13% (12-month post-randomisation period). (Adjusted comparisons with SMC not given.) Table 4 [1].
  • Illness/disability benefits - Percentage receiving payments - 32% (6-month pre-randomisation period) 38% (12-month post-randomisation period). (Adjusted comparisons with SMC not given.) Table 4 [1].
  • Income protection schemes or private pensions - Percentage receiving payments - 6% (6-month pre-randomisation period) 12% (12-month post-randomisation period. (Adjusted comparisons with SMC not given.) Table 4 [1].
  • Physical disability (6 minute walking test) - Adjusted comparison to SMC control group: -1.5m (change between baseline and 52 weeks). Absolute changes in CBT group: 333m (baseline) 354m (52 weeks). Table 6 [2].
  • Fitness (step test) - EXACT DATA NOT RELEASED. Figure 2 [3].


1. McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, Goldsmith KA, White PD. (2012) Adaptive pacing, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis. PLoS ONE 7: e40808.

2. White PD, Goldsmith KA, Johnson AL et al. (2011) Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 377:823-36.

3. Chalder T, Goldsmith KA, White PD, Sharpe M, Pickles AR. (2015) Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial. Lancet Psychiatry 2:141–52
 
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D

Dolphin

Senior Member
Messages
17,567
Update:

https://www.whatdotheyknow.com/requ...trial?nocache=incoming-698260#incoming-698260

From: QM FOI Enquiries
Queen Mary, University of London

26 August 2015
Dear Mr. McPhee



Queen Mary has completed its internal review. The reviewer has concluded
that the refusal should be upheld.



If you remain dissatisfied you can complain to the Information
Commissioner. Please see [1]www.ico.org.uk for details.



Yours sincerely



Paul Smallcombe

Queen Mary University of London

References

Visible links
1. http://www.ico.org.uk/
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D

Dolphin

Senior Member
Messages
17,567
Comment on last update https://www.whatdotheyknow.com/request/fitness_data_for_pace_trial#comment-62588

Doug Paulley left an annotation (26 August 2015)
I'd encourage you to appeal their handling of your request to the Information Commissioner's Office. Their refusal note doesn't explain or justify their use of the S14 exemption. Whilst I haven't looked at / don't know about the context, for example other FOI requests sent by you, I can't see anything in this request that I would consider meets any of the Dransfield criteria for S14, or anything that gives me any concern whatsoever. (Speaking in a personal capacity only.)
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https://www.whatdotheyknow.com/user/doug_paulley

Doug Paulley
Joined WhatDoTheyKnow in 2010

Send message to Doug Paulley

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Volunteer administrator on WhatDoTheyKnow.

Disabled activist, particularly interested in treatment in social care / discrimination in service provision. My personal FoI requests are usually on these issues, or transparency and accountability of statutory organisations.

My blog: http://www.kingqueen.org.uk
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D

Dolphin

Senior Member
Messages
17,567
(In case anyone missed it)
The journalist, David Tuller DrPH, has today posted a substantial piece on the PACE Trial:

TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study
http://www.virology.ws/2015/10/21/trial-by-error-i/

There's an introduction and summary at the start if you don't want to take on the whole thing.

It's being discussed in this PR thread:
http://forums.phoenixrising.me/inde...he-pace-chronic-fatigue-syndrome-study.40664/

ME Network have also posted their own summary piece:
http://www.meaction.net/2015/10/21/david-tuller-tears-apart-pace-trial/
 
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