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Our chronic fatigue syndrome/encephalomyelitis service is nice (?!), but is it patient friendly? experience of going beyond audit

Discussion in 'PsychoSocial ME/CFS Research' started by MeSci, Mar 17, 2018.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    Source: Archives of Disease in Childhood
    Vol 103, Suppl 1, G18
    Date: March 2018
    URL: http://adc.bmj.com/content/103/Suppl_1/A7.2

    Our chronic fatigue syndrome/encephalomyelitis service is nice, but is it patient friendly? experience of going beyond audit
    ----------------------------------------------------------
    AM Taylor, J Man, EJ Parish, T Segal
    - Children and Young People's Services, University College London Hospitals NHS Foundation Trust, London, UK

    Abstract

    Aim

    To assess the quality of diagnosis and management of Chronic Fatigue Syndrome (CFS)/Encephalomyelitis (ME) in a tertiary Service against NICE guidelines, along with views of the young people assessed.

    More at link.
     
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    Awesome.

    Wonder if Archives of Disease in Childhood is doing a special issue on CFS?
     
  3. Allele

    Allele Senior Member (Voting Rights)

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  4. NelliePledge

    NelliePledge Moderator Staff Member

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    more back of an envelope BS
     
  5. Daisybell

    Daisybell Moderator Staff Member

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    Presumably this paper was written because the authors had no clinical work to do, having had only 30 referrals to the service in total over a 12 month period. So they had to do something to justify paying them a salary. It’s unfortunate perhaps for them that the overriding impression is that the service is a waste of money and effort for all involved.
     
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  6. Hutan

    Hutan Moderator Staff Member

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    It's such a joke.

    First, it seems that only 30 people got referred to the service over a 12 month period. 3 didn't go, so that left 27.

    Of the 27 patients, when parents or the patient were contacted, only 10 'answered the telephone'. So that left 10, 8 of which were parents and 2 of which were patients.

    Of the 10, only 5 agreed with the statement ‘this is a good service for my friends and family to be looked after in if they needed similar treatment or care’.

    When we ask for more research, this isn't the sort we are asking for.
     
  7. Hutan

    Hutan Moderator Staff Member

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    I've shifted the thread to a research subforum. Our subforum headings aren't great for this type of service delivery research, there is only 'biomedical research' or 'psychosocial research' to choose from. I've put it in psychosocial research as the service offers GET and CBT.
     
  8. Trish

    Trish Moderator Staff Member

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    Looks to me like they are trying to hold on to their jobs and / or jumping through required paperwork by doing a service evaluation - and doing it very badly. What I don't understand is why a journal would publish such unscientific crap. All it boils down to is - we phoned a few people and asked if they liked us.:banghead::banghead::banghead:
     
  9. Flying Dutchman

    Flying Dutchman Established Member

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    This was published in the Archives of Disease in Childhood, which is the official journal of the Royal College of Paediatrics and Child Health.

    This paper is an abstract presented at the RCPCH's Annual Conference, held in Glasgow, 13-15 March 2018.

    One thing that stands out is that the percentages reported don't make sense. Four percentages are reported as being based on a sample size of 27 - but two of these four (43% & 73%) are not outcomes that can be obtained by selecting any whole number as a proportion of 27.

    (They had 30 referrals in all. The four percentages cannot have been obtained as proportions of 30, either.)
     
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  10. Hutan

    Hutan Moderator Staff Member

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    Well spotted @Flying Dutchman.

    I think none of the four percentages work with a divisor of 27. One works with a divisor of 30 (22/30 = 73.3%) and perhaps they could have another one with a divisor of 30 if we excuse bad rounding (26/30 = 86.7%).

     
    Last edited: Mar 26, 2018
  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    It would be good to know the split between cbt/ get within the 73%
     
  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    Could be worth contacting the authors about their percentages, and seeing what they say?
     
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  13. Hutan

    Hutan Moderator Staff Member

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    The title implies that the service is compliant with the NICE guideline criteria, it's just that those patients don't seem to be appreciating it enough.

    But regardless of how they came up with the percentages, the figures suggest much less than NICE compliance. Given that they only had 30 referrals and only 27 young people to treat in one year, you'd think they could manage to tell all patients something about symptom management, education, and general principles of ME and record that in the patient notes.

    I mean, it's not a high bar. A couple of leaflets spouting BPS nonsense, a standard letter for the young person to give their school and some boxes to tick on the patient records would cover it. And yet even that seems too hard.
     
    MEMarge, Woolie, 2kidswithME and 3 others like this.
  14. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    I'll bet the 2 who 'disagreed a lot' were the 2 patients.
     

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