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Disability and chronic fatigue syndrome: a focus on function. (Ross et al., 2004)

Dolphin

Senior Member
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17,567
I have just read the following paper. It is sometimes quoted as showing that CBT or GET have been shown to restore the ability to work. See underlined bit.

Free full text: http://archinte.ama-assn.org/cgi/content/full/164/10/1098 or http://archinte.ama-assn.org/cgi/reprint/164/10/1098

Disability and chronic fatigue syndrome: a focus on function.

Arch Intern Med. 2004 May 24;164(10):1098-107.

Ross SD, Estok RP, Frame D, Stone LR, Ludensky V, Levine CB.

Source
MetaWorks Inc, 10 President's Landing, Medford, MA 02155, USA.

Abstract

BACKGROUND:
Evidence was sought in the published literature on how best to measure, monitor, and treat disability in patients with chronic fatigue syndrome (CFS).

METHODS:
A systematic review was performed of English-language literature published between January 1, 1988, and November 15, 2001. Interventional and observational studies of adults with CFS were eligible if they reported measures of disability and employment. A qualitative synthesis of results relating impairment measures to employment was performed.

RESULTS:
Of 3840 studies identified, 37 reported employment status and some measure of mental or physical impairment associated with disability. Most patients with CFS in these studies were unemployed. In 22 studies, the employment status of control subjects was also available. Only depression seemed to be associated with unemployment in patients with CFS. No other measurable impairment seemed to be consistently associated with disability or work outcomes. Only cognitive behavior therapy, rehabilitation, and exercise therapy interventions were associated with restoring the ability to work. No specific patient characteristics were identified as best predictors of positive employment outcomes. No quantitative syntheses of results were performed.

CONCLUSIONS:
For questions of disability and employment in CFS, the limitations inherent in the current literature are extensive. Methodologically rigorous, longitudinal, and interventional studies are needed to determine baseline characteristics that are associated with the inability to work and interventions that are effective in restoring the ability to work in the CFS population. Simple and consistent evaluations of functional capacity in patients with CFS are needed.

PMID: 15159267 [PubMed - indexed for MEDLINE]

When one reads the full paper, there is not enough evidence to suggest that the underlined bit deserves to be in the abstract.
It seems to come from Table 6:

ioi30120t6.gif


Here's the text:
What Is the Evidence That in Individuals With CFS, Treatments Are Effective in Restoring the Ability to Work?

Among the 14 interventional trials with work or impairment
results after intervention, there were too few of any
single intervention with any specific impairment domain
to allow any assessment of association. Only 4 longitudinal
studies26-29 reported employment at baseline and
follow-up after intervention (Table 6). Two additional
studies11,30 reported employment at both times with no
interventions. In the 4 studies with interventions, the percentage
of patients with CFS who were employed at baseline
ranged from 0% to 39%; at follow-up (3-42 months
after baseline), employment ranged from 44% to 53%.
Interventions associated with increased employment at
follow-up included individualized rehabilitation programs,
27,29 cognitive behavior therapy,26 and exercise
therapy.28 The studies are not comparable, however, owing
to differences in study design, duration of followup,
and types of intervention. Furthermore, up to 29%
of patients were lost to follow-up. Still, all 4 studies showed
improved employment outcomes, whereas the 2 studies11,30
with no interventions showed worsening of employment
outcomes.

With regard to GET, there were 66 people in the trial.
The actual figures in the Fulcher paper are:
Thirty one (66%) patients who completed exercise treatment were work ing or studying at least part time compared with 26 (39%) of all 66 patients before treatment (95% confidence interval of difference 9% to 44%).
31/66 is where the 47% comes from. However, remember that half the group got another treatment initially (flexibility exercises and relaxation therapy) so one can't say that the GET was the reason for the increase. And there was no control group - these were Oxford criteria patients so maybe they would have improved anyway.
 
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Thanks - I'll come back for another look at this. I think this is cited uncritically in the CFS Treatment wikipedia article.
 

Snow Leopard

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Location
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By the way, the quoted drop out rate for Akagi et al. is wrong, they've mixed the results of controlled/crossover and uncontrolled trials together. And Fulcher & White is a masterful piece of cherrypicking since they didn't give the baseline figures for the GET only group (I guess you can get away with that with a mediocre crossover study).
 

oceanblue

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Location
UK
Thanks for this, Dolphin. I think they key line is:
For questions of disability and employment in CFS, the limitations inherent in the current literature are extensive.
though of course, once that dodgy line about only cbt/get restoring the ability to work is out in the literature it can be uncritically cited at will.

One small point: I don't think natural recovery is limited to Oxford-criteria patients; whatever criteria used they need a control group of sorts to distinguish between natural recovery (and experimental factors eg scales used) and improvement due to the specific therapy.
 

Dolphin

Senior Member
Messages
17,567
By the way, the quoted drop out rate for Akagi et al. is wrong, they've mixed the results of controlled/crossover and uncontrolled trials together.
Are you referring to any trials other than this one?
Cognitive behavioral therapy for chronic fatigue syndrome in a general hospital--feasible and effective.
Akagi H, Klimes I, Bass C.
Gen Hosp Psychiatry. 2001 Sep-Oct;23(5):254-60.

And Fulcher & White is a masterful piece of cherrypicking since they didn't give the baseline figures for the GET only group (I guess you can get away with that with a mediocre crossover study).
Good spot:
Thirty one (66%)
patients who completed exercise treatment were work
ing or studying at least part time compared with 26
(39%) of all 66 patients before treatment (95%
confidence interval of difference 9% to 44%).

The PhD text shows most were working or studying at baseline (again the first line isn't for all the data):
There was a significant difference (p=0.05) in the number of subjects who were working or
studying when compared to baseline, with 66% (31/47) working at I year versus 38%
(25/66) at baseline, combining the figures of those working full- and part-time. When broken
into respective part- or full-time work/study hours, 40% (19/47) were working full-time at 1
year follow-up compared to 20% (13/66) at baseline, and 26% (12/47) were working parttime
at follow-up compared to 18% (12/66) at baseline, with 62% (41/66) not working or
studying at all. Premorbid employment details revealed that 88% (58/66) were working fulltime,
4.5 % (3/66) part-time and 7.5 % (5/66) were not working before their illness at all.
 

Dolphin

Senior Member
Messages
17,567
One small point: I don't think natural recovery is limited to Oxford-criteria patients; whatever criteria used they need a control group of sorts to distinguish between natural recovery (and experimental factors eg scales used) and improvement due to the specific therapy.
Yes, agree. But research suggests that the looser the criteria for chronic fatigue/chronic fatigue syndrome, the better the prognosis.
(ref: Joyce J, Hotopf M, Wessely S. The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review. QJM. 1997 Mar;90(3):223 -33).
 

Dolphin

Senior Member
Messages
17,567
Yes.

http://www.cfids-cab.org/cfs-inform/Cbt/agaki.etal01.pdf

On page 255 it says that 22 patients dropped out before completion of treatment.
But some of these were included in the final analysis:

Page 256:
3.2. Follow-up questionnaire

[..]

Five of the 56
had attended the initial assessment only and did not return
for further CBT sessions. Of the remaining 51 patients who
commenced treatment (treatment group, TG), 11 did not
complete it. Dropouts were included in TG for the purpose
of the analysis (intention to treat) unless specified.
 

Snow Leopard

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South Australia
The 51 responses appear to have included 47 from the 'treatment group' and 5 who did not. But of those who were in the 'treatment group', 27.5% had actually dropped out and there was a response rate for the followup questionnaire of only 61%.

All in all I think it is hard to draw conclusions from the way this data has been presented...

This actually seems to be a trend unfortunately. I've been trying to put the employment related data from both controlled and uncontrolled GET and CBT studies into a neat table. But this is proving more difficult than I imagined as the data is often incompletely presented making comparisons difficult. (or poorly controlled like the Sharpe CBT trial where far more of the control group were employed compared to the intervention group at the baseline which means the results are difficult to compare).
 

Dolphin

Senior Member
Messages
17,567
The 51 responses appear to have included 47 from the 'treatment group' and 5 who did not. But of those who were in the 'treatment group', 27.5% had actually dropped out and there was a response rate for the followup questionnaire of only 61%.

All in all I think it is hard to draw conclusions from the way this data has been presented...
I was trying to see what you are saying. But 47+5=52 (not 51) - have you made an error or is this correct?
 

Snow Leopard

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You are right, I forgot to also mention the "but one reply had incomplete primary care attendance data." Which may explain why there are only 51 responses included.
 

Dolphin

Senior Member
Messages
17,567
You are right, I forgot to also mention the "but one reply had incomplete primary care attendance data." Which may explain why there are only 51 responses included.
Ok.
Best of luck compiling the employment related data. I would be interested in seeing what you put together.
 
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13,774
This group had also written this report, which made some worthwhile comments in 2002: http://archive.ahrq.gov/clinic/epcsums/cfsdissum.htm

The AHRQ are the American Agency for Healthcare Research and Quality

Thanks to WillowJ for digging this stuff up.

It is important to compare the patient's level of functioning at the time of diagnosis to his/her level of functioning prior to the onset of illness especially as it relates to work, school, social, and home activities.

The major limitations of this review are related to the weaknesses inherent in the current medical and scientific published literature related to CFS. Study designs were not sufficiently homogeneous to allow quantitative synthesis of individual study results, and external validity was low. While some studies reported test and scale results, this was highly variable with relatively sparse and inconsistent reporting of both baseline and outcome data. Longitudinal studies which would allow for assessment of effect of baseline characteristics on long-term work outcomes were extremely rare.



Longitudinal, interventional studies are mandatory in order to determine what baseline characteristics are associated with inability to work and which interventions are effective in restoring the ability to work.Authors should report more detailed information about impairment and work status at baseline and after intervention, preferably stratified by patient characteristics.

Future studies of employment status should clarify if employment means full or part time, prior work or new work, and also provide information on duration of return to work.Further research is needed to determine the impact of cognitive behavior therapy, graded exercise, and other interventions on the issue of disability.

The literature would be enhanced if standardized measurements of impairment were developed, defined, and used to evaluate the impact of all interventions, and if some assessment was made regarding the impact of impairment on employability in this specific patient population.

Further research is needed to determine validity and reliability of self-reported instruments in assessment of impairment and disability in CFS patients who are often formerly high functioning individuals, unlike chronic mentally ill patients or low functioning patients with physical impairments. Validity and reliability of these instruments should be determined in patients with concurrent or prior neuropsychological diagnoses, given the high lifetime incidence of same, and particularly in patients who may have different motivations for determining disability. Instruments should also be validated in compensation settings.

Further research is needed to determine whether and which validated neuropsychological non-self-reported assessment tools yield sufficient evidence to evaluate functionality as it relates to ability to work.

Further research in needed to determine whether there are characteristics of care providers or prior work experiences that relate to ongoing CFS disability.
 

WillowJ

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AHRQ has an ex-officio on CFSAC, Beth A. Collins Sharp, Ph.D., R.N.
Senior Advisor for Women's Health and Gender Research
 

user9876

Senior Member
Messages
4,556
The 51 responses appear to have included 47 from the 'treatment group' and 5 who did not. But of those who were in the 'treatment group', 27.5% had actually dropped out and there was a response rate for the followup questionnaire of only 61%.

All in all I think it is hard to draw conclusions from the way this data has been presented...

This actually seems to be a trend unfortunately. I've been trying to put the employment related data from both controlled and uncontrolled GET and CBT studies into a neat table. But this is proving more difficult than I imagined as the data is often incompletely presented making comparisons difficult. (or poorly controlled like the Sharpe CBT trial where far more of the control group were employed compared to the intervention group at the baseline which means the results are difficult to compare).

As well as trying to tabulate what data there is it is worth recording those trials with missing data. i.e. why it cann't be easily tabulated - as well as the underlying assumptions in the trial (e.g. diagnosis method) and other measurements.

There do seem to be a very lot of small CBT and GET trials but they all seem to be structured so that results cannot be compared.