MSer preferences and power

MSer empowerment; time to stand up an ask, ask, ask. #MSBlog #MSResearch

Solari et al. Role Preferences of People with Multiple Sclerosis: Image-Revised, Computerized Self-Administered Version of the Control Preference Scale. PLoS One. 2013;8(6):e66127.

BACKGROUND: The Control Preference Scale (CPS) is the most frequently used measure of patients’ preferred roles in treatment decisions. We revised the original CPS and developed a new computerized patient self-administered version (eCPS). We used the eCPS to assess role preferences, and their determinants, in Italian and German MSers.

METHODS: New cartoons were produced, based on MS health professional and patient input/feedback and previous findings, and pilot tested on 26 Italian and German MS patients. eCPS acceptability and reliability (weighted kappa statistic, wK) in comparison to the original tool, was determined in 92 MS patients who received both CPS versions in random order.

RESULTS: The new cartoons were well accepted and easily interpreted by MSers, who reported they based their choices mainly on the text and considered the images of secondary importance. eCPS reliability was moderate (wK 0.53, 95% confidence interval [CI] 0.40-0.65) and similar to the test-retest reliability of face-to-face administration assessed in a previous publication (wK 0.65, 95% CI 0.45-0.81). Higher education (odds ratio [OR] 3.74, 95% CI 1.00-14.05) and German nationality (OR 10.30, 95% CI 3.10-34.15) were associated with preference for an active role in the logistic model.

CONCLUSIONS: The newly devised eCPS was well received and considered easy to use by MSers. Reliability was in line with that of the original version. Role preference appears affected by cultural characteristics and (borderline statistical significance) education.

The Control Preference Scale (CPS) is the most frequently used instrument to assess patient preferences for involvement in decisions about their health. It had been found that found that Italian MSers generally preferred a collaborative role, while about a third preferred a passive role, and only about 6% prefer an active role. These findings contrast markedly with those of a German study which found that 40% of German MSers preferred an active role in decision making. This new study supports this.

“Another difference between Southern and Northern Europeans. Are you surprised? Are these differences cultural? Southern Europeans are clearly more passive when it comes to making choices about their health. Some economists would argue this extends to other aspects of their lives and may underpin the economic problems Southern Europe has at the moment. I would be interested to see data on risk-taking and risk-aversion in these populations.”

“We are now in the era of MSer empowerment with most MSers having full access to information and facts about their disease and potential treatments. MSers are savvy enough to know about the potential benefits of the change in treatment paradigm that is occurring at the moment, with a shift from the maintenance-escalation strategy to the early-and-hard approach with highly-effective treatments. Thankfully the European Medicine Agency has seen the light as well. So the era of passive acceptance of what your neurologist has to say about your treatment is over. If they recommend something you don’t agree with challenge them. When they say you have benign MS challenge them on how good they are at predicting this course? When they say drug X is too risky; ask risky  for who? Ask them to see your MRI? Ask them how many black holes you have? Ask about brain atrophy? Ask about your cognition? Don’t accept anything if you have not had an adequate explanation. The paradigm shift we need in treating MS is going to be driven by MSers as well as healthcare professionals.” 

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • Prof G, Britain's financial GDP deficient is even worse than Greece's. Your only salvation is the fact that Britain controls its own interest rate, otherwise you guys will be in an even worse situation than southern European states.

    We in southern Europe generally have a more deferring attitude to church, state and elders of the community. We're not passive, just less self-obsessed than you lot. The British have a strong sense of entitlement, whereas we do not. You guys feel that your needs excel that of everyone else's, and that's why you push for articles that you may feel will benefit you. You are hardcore consumers, as are the Germans and Scandinavians. I lived in the UK for a long time and studied medicine at Imperial.

    • I am not sure Prof G is referring to Britain in this post. The British are almost non-European. It is the Germans vs. the Italians.

    • Stavos, I am referring to compliance vs. concordance; two different philosophies of healthcare.

    • Anon 3:42, how the heck are the British "almost non-European"?

      What a senseless comment to make when you consider how much we begged and begged the EEU back in the '70s to be a part of the Union and even now are totally reliant on EU trade and subsidies. The small-minded minorities of the UK that are pushing for EU dejection are idiotic beyond belief. We are nothing without our inclusion to Europe. We have no manufacturing base and are completely reliant on corrupt service industries that is killing us.

      We need a more federal Europe. That will increase stability and make things like getting hold of new MS DMTs cheaper and quicker. The European Union creates an open market and keeps costs down. Surely that is a good thing.

    • Anon 3:59 – that is because Greece doesn't control its interst rates.

      Economists at the investment bank calculated that Britain’s budget deficit totalled £126bn (7.8%) of gross domestic product in 2013-14.

      That makes Britain the highest projected European deficit, with Morgan Stanley predicting that Greece’s would stand at 6.3% and Spain’s at just under 6%.

      Stavos is sort of right about us lot being big spenders because there's also the not-so-small issue of Britain's household consumer debt problem which, in relative terms, is the second worst in the developed world.

      Britain is in a very poor state of affairs.

    • I have noticed that this blog is becoming less scientific and more and more political. It seems that Dr. Dre's wild communist ramblings are influencing readers in very wrong ways. Not only that, the scientists running this blog almost seem to agree with him.

    • To get MS drugs and other treatments to MS in a timely fashion will need a change in the political landscape…. As to Dre's rapping you know what I think about rap! I think MD2 almost agreed with a bit of it once…. before the ramblings went off a tangent as per usual

      As to science content it depends what the science community is publishing.

      This is a forum and if you think the rap begins with a "c" say so. I think most people do say that so.

  • Are you kidding me? Let a neurologist determine what hemlock I 'should' be given. Not whilst there is a surviving neuron left in my brain!

    • Why not? Surely, the average neurologist knows more about MS and how to treat it than a patient with MS?

    • Depends on the patient. Although the high number of liberation therapy patients supports your view.
      I think that risk / benefit tolerance plays a big part in this.

  • I am responsible for my health whilst capable of making my own decisions. I can choose to take the advice of a neurologist or not. A neurologist is only one source of advice possible in respect of MS, I read widely, consult widely and am open to alternate possibilities which are not likely to cause harm. Turning over your 'power' to somebody else to heal you is a recipe for disempowerment. Physiotherapy and exercise have returned much of my physical function to me – my rehab team is the most important. I see my neuro annually, chew over the new drugs, and nothings changes. I am back in the gym pumping iron at pre MS weights, that was not a Rx prescribed by a neurologist.

By Prof G



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