Neurologists and Msers do not see eye to eye; why?

#MSBlog: Does your neurologist belong the 

Kremenchutzky and Walt. Perceptions of Health Status in Multiple Sclerosis Patients and Their Doctors. Can J Neurol Sci. 2013 Mar ;40:210-218.

Objective: To compare neurologist and MSers perceptions of multiple sclerosis (MS)-related health status.

Methods: MSers (n=99) were recruited from six sites in Canada. Following a consultation with their neurologist, MSers estimated their relapse frequency, rated their general health and quality of life (QoL), reviewed descriptions of eight health domains and selected the three most important, and completed a utility assessment using the standard gamble (SG). Concurrently, neurologists independently used the same instruments to rate their MSers' health status. Assessments were compared on the basis of paired mean values of both groups and the degree of exact agreement quantified by intraclass coefficient (ICC) and kappa analyses, which yield values of 1.0 with 100% agreement.

Results: There were significant differences (p<0.001) between MSers and neurologist ratings for relapses in the last year (0.86 vs. 0.4, respectively), QoL (61.2 vs. 69.7 (maximum score = 100) and utility (0.864 vs. 0.971); ICC analysis revealed moderate to poor levels of agreement (0.56 for QoL to 0.03 for SG). There was little concordance in identification of important health domain and the only significant associations were in bodily pain and social functioning (kappa statistic = 0.24, p = 0.026 for both). Neurologists identified physical functioning domains as important, while MSers placed more emphasis on mental health domains. 

Conclusions: Discrepancies between neurologist and MSer perceptions of MS were observed. The study identifies a need to educate neurologists on the recognition of MS health domains that are important in the definition of MSer QoL.

"Are you surprised by the results of this study? I am not! Almost every bit of research shows a disconnect between what MSers and neurologists think and expect. This applies to the assessment of risk as well; neurologists are much more risk adverse than MSers when making decisions about DMTs and treatment strategies. When will this change? May be in the next generation! May be neurologists should all join"

"I created, a hypothetical organisation, to make a point in relation to concordance in a lecture I gave at the European Charcot Foundation meeting in Lisbon back in 2005. I was promoting the concept of MSer choice with regard to DMTs. I recall being verbally attacked by many neurologists in the audience at that meeting for suggesting MSers had enough knowledge to make decisions regarding their treatment. Things have clearly moved on a lot since then, but this study shows things need to move a lot further."

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