• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

FITNET Trial: Effectiveness of internet-based CBT for CFS: an RCT (Nijhof et al, '12)

oceanblue

Guest
Messages
1,383
Location
UK
Ok, get it now. I hadn't associated the attendance figures with population norms but of course that makes sense.

---
Could you do Attendance/Fatigue. Thanks.
Tsk, some people are hard to please!

School Attendance/ 1) Function (Fun) 2) Fatigue (Fa); 3) Energy (Egy):
I think the pattern is similar in each case.

AttendFunctionFatigueEnergyA/FunA/FaA/Egy
Reference
'Healthy' population98%9530541.033.31.8
Baseline
FITNET39.5%60.751.210.00.650.83.9
Usual Care45.1%56.851.69.20.790.94.9
Post-treatment
FITNET84.3%88.524.066.70.953.51.3
Usual care51.7%70.042.328.50.741.21.8
12 months
Usual care to 6 months
Not recovered, then FITNET (n=31)85.7%84.228.457.51.023.01.5
Not recovered, more usual care (27)60.6%83.132.948.10.731.81.3
 

Dolphin

Senior Member
Messages
17,567
CAA: http://www.research1st.com/2012/03/...&utm_campaign=Feed:+Research1st+(Research1st)

Recovery By Internet CBT? A Closer Look 4 March 2012

Afraid I don't have time now to look into this one but it might prove interesting.
A bit disappointed with this. Doesn't get across the philosophy of the CBT. Like John's posts.

Here is a little bit of info they found which I think is new:
Fatigue was measured by a 20-item instrument called the Checklist Individual Strength (CIS20) and physical functioning was measured by an 87-item instrument called the Child Health Questionnaire (CHQ-CF87) http://www.healthact.com/pdf/surveys/chq.pdf . Both are standardized self-report measures. The CIS-20 has been used to measure disability in populations of workers, to measure fatigue in M.S. studies and in other CFS studies. The validity of the CHQ to measure physical functioning has been questioned in at least one study that showed poor test-retest concordance on these measures when testing chronically ill children. (Raat et al. http://www.ncbi.nlm.nih.gov/pubmed/12206578, Quality of Life Research, 2002)

ETA: I think they misinterpreted a Danny Ze-dog post. He says it shows about the Cronbach alpha:
Thank you for your post. A note about the Cronbach alpha value reported in the study by Raat et al: that value pertains not to test-retest reliability per se but to internal consistency of the measures even within a single testing. In other words, answers to questions aimed at determining the level of physical functioning showed poor concordance with one another, suggesting that questions were poorly designed to assess a respondent's physical functioning in the first place.
(Not sure I fully agree with that point re: interpretation of Cronbach alpha - I think some problems can be to do with floor/ceiling effects on some items but not others - would need to check data to see what is likely).
 

oceanblue

Guest
Messages
1,383
Location
UK
'Recovery' rates

Here's a summary of the different measures used for recovery and what proportion of FITNET and Usual Care patients achieved recovery (expanding on data given by Dolphin in a much earlier post). Even Peter White thought the recovery definition used in the main paper was flaky (it's population mean minus 2 SDs. The appendix gives the figures based on a more reasonable definiton of population mean minus 1 SD, and also requires patients to rate themselves as recovered (SRI, Self-Rated Improvement).

Nb, the CBT used encourages patients to see themselves as 'ex-patients' by the end of the therapy so this might boost the numbers rating themselves as recovered. Even so, only 39% rated themselves recovered compared with the 78% who rated themselves as recoverd or much better, which was one of the criteria for weak recovery.

AttendFunctionFatigueEnergySRI
Reference
'Healthy' population98%953054n/a
Recovery (weak, -2SD)>=90%>=85<40>33Much better/recovered
Recovery (stronger, -1SD)>=94%>=90<35>44'Completely recovered'
"Recovery" at 6 months
(% who meet threshold)
SchoolFunctionFatigueSRI
Weak recovery
FITNET75758578
Usual Care16202727
Stronger Recovery
FITNET66738139
Usual Care1319208
Attend: % school attendance; Function: CHQ-87 Physical Function sub-scale (0-100, self-rated); Fatigue (CIS-fatigue score, 8-56); Energy: CIS-Fatigue transformed to 0-100 energy scale, see 3 posts earlier for details; SRI: Self-Rated Improvement: "Completely Recovered", "Much better but still with symptoms", "No change", "Worse"

Fatigue scores transformed to 'Energy' scores
I've transformed the 8-56 fatigue scale (56=max fatigue) into a 0-100 Energy scale for easier comparison with 0-100 scores for attendance and function. 0-100 Energy scale: 100=no fatigue [CIS=8], 0 = max fatigue [CIS=56]. This makes all 3 scales (Attendance, Function and Energy) 0-100 where 100 is best.
 
Messages
13,774
(Not following this thread/study closely, so only an ignorant opinion here but):

As OB mentioned, the emphasis on views of recovery in the CBT manual make it difficult to know what these words should be taken to represent, but still, 39% self rating as completely recovered would indicate a significant rate of real recovery to me. I don't know what the natural rate of recovery is for patients like those studied is though, and as much of the control group in this study was going through face to face CBT/GET, it's difficult to know if that's a useful comparison. (I really don't know much at all about those children and adolescents being diagnosed with CFS, other than that the prognosis is generally better).

Self-rated as 'completely recovered' is a pretty good measure of recovery for CFS imo, even if there are the usual problems with response bias etc.

SRI: Self-Rated Improvement: "Completely Recovered", "Much better but still with symptoms", "No change", "Worse"
 

Dolphin

Senior Member
Messages
17,567
(Not following this thread/study closely, so only an ignorant opinion here but):

As OB mentioned, the emphasis on views of recovery in the CBT manual make it difficult to know what these words should be taken to represent, but still, 39% self rating as completely recovered would indicate a significant rate of real recovery to me. I don't know what the natural rate of recovery is for patients like those studied is though, and as much of the control group in this study was going through face to face CBT/GET, it's difficult to know if that's a useful comparison. (I really don't know much at all about those children and adolescents being diagnosed with CFS, other than that the prognosis is generally better).

Self-rated as 'completely recovered' is a pretty good measure of recovery for CFS imo, even if there are the usual problems with response bias etc.
I think there are more than the usual problems with response bias in this case: getting the patient to re-frame their views to see themselves as an ex-patient is part of the (Dutch CBT) treatment.
 
Messages
13,774
I think there are more than the usual problems with response bias in this case: getting the patient to re-frame their views to see themselves as an ex-patient is part of the (Dutch CBT) treatment.

I'd be more concerned about that were they just asked if they saw themselves as 'recovered'. I know what you mean, and think that the results are best understood in the context of that approach to CBT for CFS, but 'completely recovered' is pretty forthright. It could be that people with some residual problems would still be willing to 'positively' describe themselves as fully recovered when they are not, but I don't think many people with serious and on-going problems with fatigue would be willing to do so.

Any CBT which is intended to lead to more positive cognitions about ones illness and disability levels will lead to some inflation of subjective questionnaire scores, even without real improvement... but I think that asking patients if they would rate themselves as fully recovered is a pretty good way of seeing if they are significantly better, and largely within the normal range for fatigue.

I feel pretty distrustful of a lot of the measures used to promote different approaches to CFS, but personally, I'd like to see this cheap and easy outcome measure used more - it seems likely to provide more meaningful info that a lot of the alternatives imo.
 

Dolphin

Senior Member
Messages
17,567
I'd be more concerned about that were they just asked if they saw themselves as 'recovered'. I know what you mean, and think that the results are best understood in the context of that approach to CBT for CFS, but 'completely recovered' is pretty forthright. It could be that people with some residual problems would still be willing to 'positively' describe themselves as fully recovered when they are not, but I don't think many people with serious and on-going problems with fatigue would be willing to do so.
I don't know. If you're an adolescent and you've had therapy that sought to convince you to see your symptoms as normal symptoms that other people have, one might do. But I take your point.

However, another point to all this is that it's just one moment in time in a relapsing-remitting condition.
 

oceanblue

Guest
Messages
1,383
Location
UK
(Not following this thread/study closely, so only an ignorant opinion here but):

As OB mentioned, the emphasis on views of recovery in the CBT manual make it difficult to know what these words should be taken to represent, but still, 39% self rating as completely recovered would indicate a significant rate of real recovery to me. I don't know what the natural rate of recovery is for patients like those studied is though, and as much of the control group in this study was going through face to face CBT/GET, it's difficult to know if that's a useful comparison. (I really don't know much at all about those children and adolescents being diagnosed with CFS, other than that the prognosis is generally better).

Self-rated as 'completely recovered' is a pretty good measure of recovery for CFS imo, even if there are the usual problems with response bias etc.
I tend to agree that there is something going on here. Continuous measures, below, also indicate decent responses:

AttendFunctionFatigueEnergy
'Healthy' population98%953054
Baseline
FITNET39.5%60.751.210.0
Usual Care45.1%56.851.69.2
Post-treatment
FITNET
Usual care51.7%70.042.328.5
[td]84.3%[/td][td]88.5[/td][td]24.0[/td][td]66.7[/td]
Sure, the authors shamelessly Gerrymandered the outcomes to give rather implausible recovery rates but dig beneath that and there does seem to be some real improvement.

Caveats (of course)

1. CBT for CFS generally encourages patients to pay less attention to fatigue, but that applies to controls too. And that wouldn't affect physical function reporting to the same degree.
2. Some of the gain in school attendance may be down to displacement of home/leisure activity and there's some evidence that may have happened (see earlier posts on A/F ratio), but that can't explain all of the difference. Also, school attendance is likely to be a primary goal of both rehabilitation and CBT in the control group as these are school-age children.
3. What may be more significant is the involvement of both parents and a school mentor who may be providing additional encouragement to attend, and, I think, are responsible for 'checking' the self-rated attendance.
4. The presence at school may not be very productive i.e. just sitting there to be seen to be attending - but then the fatigue levels are really quite low too.
5. Half the FINET group had only been ill for 14 months or less so a good recovery rate would be expected - but not 37% in 6 months, and half the controls had only been ill for 16 months or less.

I'm sure these caveats can explain some of the difference between controls and FINET, but not all of it.

The control group is interesting as it's 'real world', regular-clinic-not-research-trial therapy and the results are pretty awful. Which doesn't say much for the current system in Holland (which I gather is predominantly CBT).

It may be that the exact nature of the internet therapy is more important than the CBT element itself. But I think it's worth trying to understand what these results really mean.
 
Messages
13,774
The control group is interesting as it's 'real world', regular-clinic-not-research-trial therapy and the results are pretty awful. Which doesn't say much for the current system in Holland (which I gather is predominantly CBT).

It may be that the exact nature of the internet therapy is more important than the CBT element itself. But I think it's worth trying to understand what these results really mean.

Not knowing what we should expect from the control group does make it hard to interpret the results.
 

oceanblue

Guest
Messages
1,383
Location
UK
Not knowing what we should expect from the control group does make it hard to interpret the results.
It does, but I don't think there is any reason to expect the control to be anywhere near the FITNET results, which is what makes them so intriguing.

However, with the excpetionally high response to FITNET, and the surprisingly low control response, what's needed most here is a larger replication study. 60-odd in each group isn't bad, but isn't huge either. Certainly I don't think the authors are justified in claiming:
The results of this study justify implementation on a broader scale.
Replicating the research on a broader scale is what's required.
 

Dolphin

Senior Member
Messages
17,567
(To nobody in particular)
Saw this posted on a discussion on the CAA's FB by Danny Ze-dog:
The danger of relying on self-report rather than objective measures to assess physical function has been noted many times before. For example, Barber (1991) studied the correlation between subjective health questionnaire reports and cardiac function in adolescent patients and found that "questionnaire data significantly overestimated exercise ability in 67% and underestimated it in 3% of the subjects".
 
Messages
13,774
The results of this study justify implementation on a broader scale.

I guess it depends what it's compared to. If this meant moving resources away from face to face CBT/GET to a FITNET approach, then that could be justifiable with this study alone imo, given the weakness of evidence for the value of face to face CBT/GET. I don't think it would justify putting funding in to CFS 'treatments', but it seems to make it even harder to justify spending money on traditional CBT/GET.

Personally, I think an online approach, where both sides have a full record of all contacts, lessens some of the problems innate to the traditional CBT/GET approach to CFS anyway.
 

oceanblue

Guest
Messages
1,383
Location
UK
(To nobody in particular)
Saw this posted on a discussion on the CAA's FB by Danny Ze-dog:
The danger of relying on self-report rather than objective measures to assess physical function has been noted many times before. For example, Barber (1991) studied the correlation between subjective health questionnaire reports and cardiac function in adolescent patients and found that "questionnaire data significantly overestimated exercise ability in 67% and underestimated it in 3% of the subjects".
Would love to find that reference - got nowhere on google.
 

Sam Carter

Guest
Messages
435
Would love to find that reference - got nowhere on google.

Maybe here, OB?

Curr Opin Cardiol. 1991 Feb;6(1):107-9.

Pediatric exercise testing.

Barber G.

ETA: Or this?

Ped Exerc Sci, 1991

Subjective estimates of exercise ability: Comparison to objective measurements

Barber G.
 

oceanblue

Guest
Messages
1,383
Location
UK
ETA: Or this?

Ped Exerc Sci, 1991

Subjective estimates of exercise ability: Comparison to objective measurements

Barber G.
Thanks, Sam.

Subjective Estimates of Exercise Ability: Comparison to Objective Measurements

Although not well validated, physicians frequently use subjective estimates of exercise ability to assess clinical status and therapeutic results. This study employed a standardized questionnaire and cardiopulmonary exercise test to compare the results of subjective estimates by 211 patients (mean age 13.9 yrs) with objective measurements of exercise ability. Questionnaire data correlated with measured maximal oxygen consumption. Individuals thought to be below average had a maximal oxygen consumption of 21 6 ml/kg/min. Those thought to have average fitness had a maximal oxygen consumption of 26 8 ml/kg/min, and those thought to be above average had a maximal oxygen consumption of 30 7 ml/kg/min. There was a great degree of overlap and scatter of these data, however, such that questionnaire data significantly overestimated exercise ability in 67% and underestimated it in 3% of the subjects. In only 30% of the subjects did the subjective estimate of exercise ability correspond with objectively measured exercise ability. It was concluded that subjective estimates are unreliable and should not be used in assessing the functional status of an individual patient, but subjective estimates may give some idea of objective capabilities in large population studies.

However, a couple of more recent papers on adolescents and adults with heart disease found decent correlation of r = 0.521 and r=0.435 (see fig 3), with Physical Functioning questionnaire scores. I'm also not sure how precise a correlation there should be between general physical capability (e.g. ability to climb a flight of stairs) with peak oxygen uptake.

but it's certainly useful evidence of the problems of relying on questionnaires to assess physical function.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
If the school year in the UK is 190 days and a 10% absence is allowed as "recovery", that amounts to 19 days, or almost twice as much absence as is permitted in unexceptional circumstances (10 days).

Edit: correction - up to 19 days
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I realized that's the wrong country above, but I doubt I could read the official sites for Netherlands...