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Longitudinal follow-up of employment status in patients with CFS after mononucleosis (Nyland et al.)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Nov 27, 2014.

  1. Dolphin

    Dolphin Senior Member

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    Free full text at: http://bmjopen.bmj.com/content/4/11/e005798.long

    For anyone interested, one can also read the review history here: http://bmjopen.bmj.com/content/4/11/e005798.reviewer-comments.pdf and the earlier drafts here: http://bmjopen.bmj.com/content/4/11/e005798.draft-revisions.pdf

     
  2. Dolphin

    Dolphin Senior Member

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    An important thing to note is this was a young cohort
    [text says mean age of 23 but the text also says "the mean age of the patients at the onset of CFS was 23.7 years (SD=7.3)" and Table 2 (which is the group that they actually have data for) suggests 24].
    [To be exact: one group's mean (SD) age was 23.8 (7.9) (n=36); for the other group it was 24.1 (7.0)]
    ETA: I misread this slightly. This is the age at onset. The age at the first assessment was 26.8 (7.5) for one group (n=36) and 29.3 (7.0) for another group (n=54).

    Studies have suggested younger people have a better prognosis.

    ---
    The abstract says 10% were in part-time or full-time employment at baseline.
    It doesn't mention: "12 patients (13.5%) were students".
    At time point two, "one patient (1%) was a student."

    Related to this:
    So one might say that part of the reported increase in employment is somewhat artificial as being a student can be as demanding as working.

    ----

    Also, patients with mono may have a better prognosis than other forms of CFS. For example, in Katz et al. 13% of adolescents had CFS at 6 months but only 4% had CFS at 24 months. That means that 9/13 (69%) of those who had CFS at 6 months did not have CFS at 24 months.

    The total cohort the authors could have written to was 873 so this is only 12.7% of them. They don't say if they wrote to the others or not. This group may not be representative.
     
    Last edited: Nov 27, 2014
  3. A.B.

    A.B. Senior Member

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    CFS following mononucleosis probably has a better prognosis than other forms. Unfortunately that's a minority:
    What is happening with the other 762 patients?

    I also like this part (and I'm sure Mr Wessely does not)

     
    Last edited: Nov 27, 2014
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  4. Dolphin

    Dolphin Senior Member

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  5. Dolphin

    Dolphin Senior Member

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  6. Esther12

    Esther12

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    Thanks.

    I only had a very brief look, but this seems a bit too positive:

    The change in the number unemployed was from 70% to 40%:

    http://bmjopen.bmj.com/content/4/11/e005798/F1.large.jpg[​IMG]
    (While I was typing Dolphin has been pointing out similar things).
     
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  7. Esther12

    Esther12

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    The don't cite the PACE employment data... I wonder if it being presented in the cost-effectiveness paper means lots of researchers just aren't aware of it?

     
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  8. Dolphin

    Dolphin Senior Member

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    The abstract and summary points both give the impression that depression was associated with employment outcomes.

    However, the text makes this clear this is not the case:

    This is true both for depression measured at the first timepoint and also at the second timepoint.

    Here's the WSAS questionnaire:
    Here's the FSS:
     
    Last edited: Nov 27, 2014
  9. Simon

    Simon

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    Just to clarify, for my own benefit as much as anything.
    • This is a study of CFS patients whose illness began with mono/glandular fever and who had been ill for an average of 4.7 years at baseline and at that point had an average age of 28.
    • Follow-up was at varying times and patients were ill for an average of 11.4 years at follow-up (does that include those who rated themselves as recovered?)
    • 70% were unemployed at baseline, 40% at follow up, a 43% fall, (but nb for a healthy population the unemployment rate might not be zero eg could be 10%, esp if it includes people not working through choice eg raising families)
    • Based on self-assessment, 70% had improved, including 13% recovered (though does that include minor improvement?)
    I'm not sure what to make of these results. The improvement rates look much better than I seem to recall from elsewhere given they had already been ill for an average of five years, but they were quite a young group. It's also possible that most of the improvement came from those who had been ill for a shorter time at baseline, since illness duration at baseline correlated with fatigue at follow-up.
     
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  10. alex3619

    alex3619 Senior Member

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    We know from the Dubbo studies, and Lloyd's recent comment reported on the Simmaron blog, that only about 2% of EBV induced CFS go on to near permanent illness. Most recover, though slowly. How do we know this does not reflect the natural time course? I actually consider it a dismal result.

    Edit: correction, that's 2% of EBV patients, or about 20% of CFS-like post mono patients.
     
    Last edited: Nov 28, 2014
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  11. Snow Leopard

    Snow Leopard Hibernating

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    The 'recovery' rates are still quite low, what we have here is ill people who are still managing to work.

    One alternative take home message, is that all of the various laws towards non-discrimination towards those with disabilities, providing greater accessibility, supportive working environments etc may actually be working vs US/Australia where few employers will consider you, let alone make significant adjustments to allow you to work.
     
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  12. A.B.

    A.B. Senior Member

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    I just realized how contradictory the psychobabbler position on receipt of sickness benefits is. They emphasize the importance of stress reduction. There is no doubt that being pushed to work even when sick, or having to fight for support while being sick, and existential fears are very stressful. The psychobabblers however insist that it's good to inflict this stress on patients.

    There is certainly more than one way to see things.

    PS: they also seem to have no problem recruiting the family to be less supportive towards the patient, which can also be quite stressful.
     
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  13. Sean

    Sean Senior Member

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    Evil, I think is the word you are looking for. The kind of damage that does to people and families is inexcusable.
     
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  14. Esther12

    Esther12

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    Yeah - I'd have liked more detail on this.
     
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  15. Simon

    Simon

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    Doodling slightly here but have tried to present the results of this study in a clearer way.

    Unemployment is in red while employment (full or part time) or being a student is in green. Onset is when they got ill, Contact 1 is typically 5 years later, contact 2 another six years on.

    Clearly things have improved but Contact 2 remains a great deal worse than onset. It's possible that 11 years from onset (age 35 vs age 24 at onset), some people would not be working anyway due to raising families, but even so....

    Oh, employment at onset wasn't split into full/part-time so interpret with caution.

    upload_2014-12-9_7-19-28.png

    Edited to correct age (thanks @Dolphin) and to give correcct percentages (previous graph was number of people with data, ex 92)
     

    Attached Files:

    Last edited: Dec 9, 2014
  16. Simon

    Simon

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    Commentary: Improvement in CFS patients after Glandular Fever/Monoucleosis

    I think this is an important study giving good data on and analysis of outcomes for patients who developed CFS after Infectious mononucleosis (or Glandular Fever, usually caused by EBV)
    • It's one of the largest long-term follow-ups I've seen
    • Has a relatively 'clean' cohort (CFS post-GF only)
    • Uses an objective measure, employment, as the primary outcome
    • The results are actually quite encouraging (though it was a young cohort, half of whom had been ill for only three years or less)
    • The authors recognise that Benefits can help return to work rather than arguing this is a secondary 'gain' of the illness
    • The results are also reported fairly:
    The study comes from a Neurology department, in Haukeland hospital - of Rituximab fame. And although this wasn't a trial, patients were encouraged to use self-management, which sounded like pacing/activity management, and the authors concluded that this probably contributed to the relatively good outcomes:
    How the study worked (important)
    Unfortunately, this wasn't a prospective study where you take a bunch of patients and follow them at consistent time points.

    The first contact was any time between 1996–2006, the second and final contact (questionnaire follow-up) was in 2009, an average of 6.5 years later. There was huge variation within the sample, eg at the second and final contact in 2009 one patient had been ill for 24 years whereas the shortest illness duration was 5 years. So there is a huge amount of variation as to how long patients had been ill when they were followed-up.

    At the first contact, patients had bean ill for a mean of 4.7 years, and again that hides a lot of variation. The median (midpoint) was only 3.2 years, spread into four 'quarters' like this:
    upload_2014-12-11_13-45-28.png

    So it's possible that patient who had only been ill for a short time are responsible for most of the improvement between first and second contacts. More on this later, but its seems like it isn't a massive factor.

    Results

    Pleasingly, the study used employment status as the primary outcome, which I graphed below. Unemployment is in red while employment (full or part time) or being a student is in green. Onset is when they got ill, Contact 1 is typically 5 years later, contact 2 another six years on (though there is a lot of variation in follow-up times, as I said earlier).

    Clearly things have improved for many patients, but the overall situation at Contact 2 remains a great deal worse than onset.
    upload_2014-12-11_13-52-17.png

    Caution: It's possible that 11 years from onset (age 35 vs age 24 at onset) some people would not be working anyway due to raising families so unemployment might not be zero even for a healthy group. Please bear in mind that employment at onset wasn't split into full/part-time..

    More on 'improvers'
    The study measured 'improvement' in several ways. As well as change in employment status, they looked at
    • self-rated change (worse, stable, improved or recovered)
    • Fatigue, measured by the Fatigue Severity Scale, 1=no fatigue, 7=extremely fatigued; they then looked at CHANGE in fatigue between contact 1 and contact 2: a change of 1.0 or less was counted as stable (note the score is an average over 9 questions so a change of 1.1 is possible and would count as improvement/worsening)
    The graph shows how patients improved on a number of different measures.
    upload_2014-12-11_14-10-0.png
    Note that half of those employed are now working full-time, compared with only 10% at contact 1, so presumably there has been an increase in hours worked per person, as well as more people working. [some of the gain may have been from full-time students at contact 1 becoming full-time employees at contact 2, we don't know if students were full or part time at contact 1].

    One reason more people showed improvement in self-rated change than fatigue could be because they were measured in slightly different ways. Self-rated change includes any improvement, however small, while fatigue improvement required a mininum improvememt of 1.0 (0-6.0 possible for someone going from maximum fatigue to none).

    Most people improved, even those who hadn't improved at Contact 1
    Another interesting point was that of the 26 people who said they had alread improved at Contact 1, 25 improved again by Contact 2. And of the 38 who reported they hadn't improved before, 25 (66%) improved by Contact 2.

    Fatigue improved much less than employment status

    One slightly strange finding, which the authors didn't comment on, is that average fatigue levels falls rather modestly compared with the percentage improving in employment status. FSS scores were 6.4 at Contact 1, falling to 5.0 at Contact 2 - and 5.0 is the threshold set for 'severe fatigue' so this group of people, including those now working, are still pretty fatigued.

    It seems likely that this in part is down to people getting back to work but still struggling, so that their level of fatigue doesn't improve as much as it might. Interesetingly, 13% rate themselves as 'recovered' compared with 28% who are working full time, which supports this view to some extent. On the other hand, Fatigue score was highly correlated with employment status (r=0.5, which is fairly impressive) i.e. those in employment were substantially less fatigued than those not in employment.

    So perhaps what's happening is at least some people are improving and choosing to work at least part-time despite not being fully well.

    Cognitive problems improved for a good number
    The proportion reporting cognitive problems felll significantly between contacts 1 and 2 (both p<0.001):
    Concentration problems: 83% => 58%
    Memory problems: 72% => 51%
    Many other symptoms reduced too, though to a lesser extent.

    A minority got worse
    • 12% rated themselves worse overall
    • 8% showed deterioration in fatigue of 1.0 points or more
    How much worse they got isn't clear. You would expect some people to get worse due to natural fluctuations (just as some will improve for the same reason even for individuals who are roughly on a level over time). Possibly some people ot catastrophically worse: that information wasn't reported.

    The number of people getting a permanent Disability Pension, as opposed to merely sickness benefits, increased dramatically from 8 to 54, but it isn't clear if that was down simply to the longer of time they had been ill byy Contact 2, as opposed to any deterioration in health.

    What 'predicts' return to work/improvement over time? (not a lot)
    The authors ran some fancy models to see what predicted being in employment at final contact, or improved fatigue score.

    For symptoms, less joint pain (arthralgia) did predict a better employment outcome but the p value was only 0.028 and almost certainly wouldn't have been significant if the results had been corrrected for mulitple comparisons. No other symptoms were significant predictors.

    Looking at fatigue instead of employment, joint pain and depression and Contact 1, and eduction, were predictors - but between them these three factors only accounted for 22% of variance - out of a possible 100%, so there's nothing much going on here either.

    It isn't clear if they looked at length of illness as a predictor [I will ask the study authors], so at least to me it still isn't clear to what extent the relatively short illness duration of many patients contributed to what appear to be better than expected results.
     
    Last edited: Dec 11, 2014

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