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

Discussion in 'Latest ME/CFS Research' started by Dolphin, Feb 29, 2012.

  1. oceanblue

    oceanblue Senior Member

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    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.

    [table="align: left"]
    [tr][th][/th][th]Attend[/th][th]Function[/th][th]Fatigue[/th][th]Energy[/th][th]A/Fun[/th][th]A/Fa[/th][th]A/Egy[/th][/tr] [tr][td]Reference[/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]'Healthy' population[/td][td]98%[/td][td]95[/td][td]30[/td][td]54[/td][td]1.03[/td][td]3.3[/td][td]1.8[/td][/tr] [tr][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]Baseline[/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]FITNET[/td][td]39.5%[/td][td]60.7[/td][td]51.2[/td][td]10.0[/td][td]0.65[/td][td]0.8[/td][td]3.9[/td][/tr] [tr][td]Usual Care[/td][td]45.1%[/td][td]56.8[/td][td]51.6[/td][td]9.2[/td][td]0.79[/td][td]0.9[/td][td]4.9[/td][/tr] [tr][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]Post-treatment[/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]FITNET[/td][td]84.3%[/td][td]88.5[/td][td]24.0[/td][td]66.7[/td][td]0.95[/td][td]3.5[/td][td]1.3[/td][/tr] [tr][td]Usual care[/td][td]51.7%[/td][td]70.0[/td][td]42.3[/td][td]28.5[/td][td]0.74[/td][td]1.2[/td][td]1.8[/td][/tr] [tr][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]12 months[/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]Usual care to 6 months[/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]Not recovered, then FITNET (n=31)[/td][td]85.7%[/td][td]84.2[/td][td]28.4[/td][td]57.5[/td][td]1.02[/td][td]3.0[/td][td]1.5[/td][/tr] [tr][td]Not recovered, more usual care (27)[/td][td]60.6%[/td][td]83.1[/td][td]32.9[/td][td]48.1[/td][td]0.73[/td][td]1.8[/td][td]1.3[/td][/tr][/table]
  2. Dolphin

    Dolphin Senior Member

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    :) Thanks. Actually meant A/Egy but you did both anyway.
  3. Dolphin

    Dolphin Senior Member

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    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:
    ETA: I think they misinterpreted a Danny Ze-dog post. He says it shows about the Cronbach alpha:
    (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 likes this.
  4. oceanblue

    oceanblue Senior Member

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    You've reminded me why I created the Energy measure in the first place: I thought it would give more consistent results when looking at ratios.
  5. oceanblue

    oceanblue Senior Member

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    '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.

    [table="align: left"]
    [tr][th][/th][th]Attend[/th][th]Function[/th][th]Fatigue[/th][th]Energy[/th][th]SRI[/th][/tr] [tr][td]Reference[/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]'Healthy' population[/td][td]98%[/td][td]95[/td][td]30[/td][td]54[/td][td]n/a[/td][/tr] [tr][td]Recovery (weak, -2SD)[/td][td]>=90%[/td][td]>=85[/td][td]<40[/td][td]>33[/td][td]Much better/recovered[/td][/tr] [tr][td]Recovery (stronger, -1SD)[/td][td]>=94%[/td][td]>=90[/td][td]<35[/td][td]>44[/td][td]'Completely recovered'[/td][/tr] [tr][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]"Recovery" at 6 months
    (% who meet threshold)
    [/td][td]School[/td][td]Function[/td][td]Fatigue[/td][td]SRI[/td][td][/td][/tr] [tr][td]Weak recovery[/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]FITNET[/td][td]75[/td][td]75[/td][td]85[/td][td]78[/td][td][/td][/tr] [tr][td]Usual Care[/td][td]16[/td][td]20[/td][td]27[/td][td]27[/td][td][/td][/tr] [tr][td]Stronger Recovery[/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]FITNET[/td][td]66[/td][td]73[/td][td]81[/td][td]39[/td][td][/td][/tr] [tr][td]Usual Care[/td][td]13[/td][td]19[/td][td]20[/td][td]8[/td][td][/td][/tr][/table]
    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"

  6. Esther12

    Esther12 Senior Member

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    (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.

  7. Dolphin

    Dolphin Senior Member

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    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.
  8. Esther12

    Esther12 Senior Member

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    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.
  9. Dolphin

    Dolphin Senior Member

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    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.
  10. oceanblue

    oceanblue Senior Member

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    I tend to agree that there is something going on here. Continuous measures, below, also indicate decent responses:

    [table=align: left][tr][th][/th][th]Attend[/th][th]Function[/th][th]Fatigue[/th][th]Energy[/th][/tr] [tr][td]'Healthy' population[/td][td]98%[/td][td]95[/td][td]30[/td][td]54[/td][/tr] [tr][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]Baseline[/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]FITNET[/td][td]39.5%[/td][td]60.7[/td][td]51.2[/td][td]10.0[/td][/tr] [tr][td]Usual Care[/td][td]45.1%[/td][td]56.8[/td][td]51.6[/td][td]9.2[/td][/tr] [tr][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]Post-treatment[/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]FITNET[/td][td]84.3%[/td][td]88.5[/td][td]24.0[/td][td]66.7[/td][/tr] [tr][td]Usual care[/td][td]51.7%[/td][td]70.0[/td][td]42.3[/td][td]28.5[/td][/tr] [tr][td][/td][td][/td][td][/td][td][/td][td][/td][/tr][/table]
    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.
  11. Esther12

    Esther12 Senior Member

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    Not knowing what we should expect from the control group does make it hard to interpret the results.
    Dolphin likes this.
  12. oceanblue

    oceanblue Senior Member

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    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:
    Replicating the research on a broader scale is what's required.
  13. Dolphin

    Dolphin Senior Member

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    (To nobody in particular)
    Saw this posted on a discussion on the CAA's FB by Danny Ze-dog:
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  14. Esther12

    Esther12 Senior Member

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    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.
  15. oceanblue

    oceanblue Senior Member

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    Would love to find that reference - got nowhere on google.
  16. Sam Carter

    Sam Carter Guest

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    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.
  17. oceanblue

    oceanblue Senior Member

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    Thanks, Sam.

    Subjective Estimates of Exercise Ability: Comparison to Objective Measurements

    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.
  18. Bob

    Bob

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    England, UK
  19. WillowJ

    WillowJ Senior Member

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    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
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  20. WillowJ

    WillowJ Senior Member

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    I realized that's the wrong country above, but I doubt I could read the official sites for Netherlands...

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