British Association for CFS/ME (BACME) - National Outcomes Database (NOD) 2012

[cornwall13]

Hi

Sorry if this has been discussed before, but I was looking at the wesbite above and I came across the National Outcomes Database (NOD) 2012. http://www.bacme.info/document_uploads/NOD/NOD data report 2012_02.xls from the website http://www.bacme.info/nod/.

If you click on tabs at the bottom comparing the NOD vs PACE you can see that the following info:

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)

Fatigue (Chalder)
PACE APT 28.5 23.1 -5.4
PACE CBT 27.7 20.3 -7.4
PACE GET 28.2 20.6 -7.6
PACE SMC 28.3 23.8 -4.5
NOD 26.3 19.8 -6.6

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

The NOD's data shows that after 12 months on the Chalder Fatigue patients decreased from 26.3 to 19.8 (which is pretty in line with the PACE trial). However, compare that to the SF36 questionnaire and 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, which I think the PACE trial shows are not cost effective. Bearing in mind that over 4000 patients were were interviewed over 30 different clinical teams.

 

[Firestormm]

cornwall13 you boffin you

NODDY had been on my 'things to look at' for a while. But I think the last time I (we) really did was when that unemployment cost paper came out I think last year. You remember the one? Anyway, your post has prompted me to take another look at the changes they have implemented in terms of tightening their measuring criteria etc. which is something I think they had promised they would do and I see from the website they claim now to have done.

NOD is important as it is the means by which they try and measure the effectiveness of the specialist centre interventions of course and the data does get used as a basis for their research.

Definitely something I need to look at I think although the data you cite above is well beyond my ability to comment upon

Take it easy.

 

[Dolphin]

Hi

Sorry if this has been discussed before, but I was looking at the wesbite above and I came across the National Outcomes Database (NOD) 2012. http://www.bacme.info/document_uploads/NOD/NOD data report 2012_02.xls from the website http://www.bacme.info/nod/.

If you click on tabs at the bottom comparing the NOD vs PACE you can see that the following info:

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)

Fatigue (Chalder)
PACE APT 28.5 23.1 -5.4
PACE CBT 27.7 20.3 -7.4
PACE GET 28.2 20.6 -7.6
PACE SMC 28.3 23.8 -4.5
NOD 26.3 19.8 -6.6

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

The NOD's data shows that after 12 months on the Chalder Fatigue patients decreased from 26.3 to 19.8 (which is pretty in line with the PACE trial). However, compare that to the SF36 questionnaire and 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, which I think the PACE trial shows are not cost effective. Bearing in mind that over 4000 patients were were interviewed over 30 different clinical teams.

The results were quite similar, although not exactly in the same, in this study published this year:

Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database.

QJM. 2013 Jun;106(6):555-65. doi: 10.1093/qjmed/hct061. Epub 2013 Mar 28.

Crawley E, Collin SM, White PD, Rimes K, Sterne JA, May MT; CFS/ME National Outcomes Database.
QJM. 2013 Jun;106(6):555-65. doi: 10.1093/qjmed/hct061. Epub 2013 Mar 28.

Free full text: http://qjmed.oxfordjournals.org/content/106/6/555.full.pdf

 

[biophile]

It is difficult to reliably compare the two studies, because the NOD study had no control group and a much larger proportion of patients (about half) were lost to follow-up.

 

[Esther12]

I can't believe people are making money from providing those 'services'. It really 't surprise me at all if homeopathy were more effective at improving questionnaire scores for patients.

 

[Firestormm]

talkhealth forums: CFS/Fibromyalgia/ME Wednesday August 14 2013

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
Founder Director Vitality360 Limited & Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME

Incidentally, this online NHS clinic (you might need to register to view the link above), has really taken off. It's attracted controversy (GET), but the medical queries have certainly kept Dr Shepherd very busy from what he's been saying. Some good questions being asked I noticed.

Anyway, thought as I hadn't heard from cornwall13 for a while I'd repost the reply from Jessica.

Reply has been edited adding spaces for improved readability - I hope