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." 

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