Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Large patient survey - "Burden of Treatment" (Not CFS specific)

Discussion in 'General ME/CFS News' started by Bob, Oct 8, 2013.

  1. Bob


    England (south coast)
    This is not specific to CFS or ME, but researchers in France are looking for responses from all patient groups about the burden of complying with treatments. For example, if anyone has been prescribed GET, then they'd be interested. The researchers say that they are working in close collaboration with the Cochrane Collaboration who are a well known international group who carry out reviews of scientific literature, and other work in science. Cochrane generally have a very good reputation.

    To participate, you must have received treatment for at least 6 months (medication and/or lifestyle changes and/or surveillance).

    Burden of Treatment
    Development of an Instrument to assess Treatment Burden

    "This study should take about 30 minutes."

    Message from the researchers, via a Cochrane group email:

    The following info about the survey is taken from their survey website....

    We need more participants from the UK, Australia, Canada and Spain!
    Thanks to your contributions, we have gathered invaluable information about the burden of treatment.
    We still need more participants living in these countries.
    Spread the word!

    The burden of treatment represents the challenges associated with everything patients do to care for themselves.
    For example: visits to the doctor, medical tests, treatment management, and lifestyle changes...
    Patients with chronic conditions find it difficult to integrate everything asked of them in their everyday life (between work, family life and/or other obligations).
    For example, patients with type 2 diabetes should spend 143 minutes per day taking care of themselves if they were to follow every doctors’ orders.

    Most doctors are unaware of the remarkable efforts patients must make in order to care for themselves.

    To improve patient care, new effective and less burdensome treatments must be developed!
    The first step to achieve a medicine that takes into treatment burden is to develop scientific and reliable tools to identify overburdened patients.

    Study objectives
    We wish to understand how difficult it is for you to take care of your health; to understand the burden of your treatment.
    How do you adapt your everyday life to your healthcare needs? What doctors advice do you find easy or difficult to follow?
    During this research study, we hope to identify which aspects of healthcare bother you the most and use your answers to create an instrument to measure the Burden of treatment.

    Why should I participate ?
    Understanding problems patients may have following directives from their doctors could help physicians develop treatments both effective and acceptable for patients.
    Your participation could improve healthcare for all patients with chronic conditions!
    All you will be asked is to complete a unique web-questionnaire on Treatment Burden.

    Who can participate ?
    This study concerns all patients with at least one chronic condition, such as high blood pressure, diabetes, chronic obstructive pulmonary disease...
    To participate, you must have received treatment for at least 6 months (medication and/or lifestyle changes and/or surveillance).
    Dolphin, aimossy, biophile and 3 others like this.
  2. Sparrow

    Sparrow Senior Member

    Heart rate monitoring, taking medications, lots of doctors appointments, etc. all count as "treatment" as well. I suspect most of us would be qualified to participate in this study.

    I completed it in one stretch, though I probably shouldn't have. It took a long time, but you can save partway through if you want to come back to it. Make sure to submit that page of answers before you leave, though, or that section won't be saved.

    I tried very hard not to be ranty, and not to say anything that would encourage less testing or fewer specialists for people with our condition. I also tried not to talk too much about alternative health care so as not to be brushed off as a quack. ;)
    Little Bluestem, Valentijn and Bob like this.
  3. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Bump for anyone who might like to contribute.
    Bob likes this.

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