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National Outcomes Database (NOD)

Postby cornwall13 on Wed Aug 14, 2013 4:28 pm

Hi

Mainly a question for Jessica Bavinton, as I found the link to British Association for ME from her profile.

After looking at the website British Association for CFS/ME I found a link to the National Outcomes Database (NOD) for data report 2012. Link can be found here at the bottom of the page http://www.bacme.info/nod/.

These tables show how changes in mean scores at assessment and 12 months later compare with PACE trial results
(APT = Adaptice Pacing Therapy; CBT = Cognitive Behavioural Therapy; GET = Graded Exercise Therapy; SMC = Standard Medical Care)

Physical function (SF-36)
PACE APT 37.2 45.9 +8.7
PACE CBT 39.0 58.2 +19.2
PACE GET 36.7 57.7 +21.0
PACE SMC 39.2 50.8 +11.6
NOD 41.9 46.6 +4.7

My question is the NOD's data shows that after 12 months on the mean went from 41.9 to 46.6, which doesn't really compare to the PACE trial. Its actually lower than APT and SMC, Bearing in mind that over 4000 patients were were interviewed over 30 different clinical teams.

Out of interest why was there such a small improvement in the specialist cfs/me services around the country compared with the PACE trial?

Regards
cornwall13
 
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Re: National Outcomes Database (NOD)

Postby Jessica Bavinton on Wed Aug 14, 2013 5:15 pm

Hello Cornwall13

A good question, and one that the NHS community is aware of and trying to address.

We don't know for sure, but I suspect a few things are at play:

I suspect therefore that in some cases, what is being provided by the NHS is different from the PACE trial, and therefore can't be easily compared. Some NHS services are not able to provide the 15 one-to-one (one hour) sessions as undertaken in the PACE trial, for example. The PACE trial also had a very high level of training and supervision for the research therapists, which is not always easy to replicate in the NHS. It's also sometimes not straightforward to distinguish between GET/CBT and APT in clinical practice, whereas this was very carefully separated during the PACE trial. This is my personal hypothesis, but would need further exploration.

One thing we are doing via BACME is to put together training for NHS therapists nationally that more closely replicates the PACE protocols than training undertaken previously: this ensures that the new learning from the PACE trial is disseminated more widely.
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
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Re: National Outcomes Database (NOD)

Postby johnbell on Wed Aug 14, 2013 8:05 pm

Jessica Bavinton wrote:Hello Cornwall13

A good question, and one that the NHS community is aware of and trying to address.

We don't know for sure, but I suspect a few things are at play:

I suspect therefore that in some cases, what is being provided by the NHS is different from the PACE trial, and therefore can't be easily compared. Some NHS services are not able to provide the 15 one-to-one (one hour) sessions as undertaken in the PACE trial, for example. The PACE trial also had a very high level of training and supervision for the research therapists, which is not always easy to replicate in the NHS. It's also sometimes not straightforward to distinguish between GET/CBT and APT in clinical practice, whereas this was very carefully separated during the PACE trial. This is my personal hypothesis, but would need further exploration.

One thing we are doing via BACME is to put together training for NHS therapists nationally that more closely replicates the PACE protocols than training undertaken previously: this ensures that the new learning from the PACE trial is disseminated more widely.


Its not clear whether the pace trial is measuring real effects or just different placebo effects due to different expectations of different treatments.
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Re: National Outcomes Database (NOD)

Postby Laurellen on Thu Aug 15, 2013 10:33 pm

Jessica Bavinton wrote:A good question, and one that the NHS community is aware of and trying to address.


One problem is that this community has a rather strong self-interest in presenting their interventions as being worthwhile, regardless of what the data says. The homeopathy community has yet to be convinced by claims that their treatments are not worth the time, money and trouble.

It is also difficult to argue that the poor results for CFS interventions patients received is a result of too much activity management and not enough GET, when an assessment (done by promoters of CBT/GET) of this data found:

"Comparing the three services that said they offered CBT/GET with the three services that only offered activity management, suggested that patients attending services offering CBT and GET had less improvement in fatigue at 12 months"

http://qjmed.oxfordjournals.org/content ... ct061.full
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