Patient perceived risk and acceptance
C. Heesen
Institute of Neuroimmunology and MS Research, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
ECTRIMS Online Library. Heesen C. Oct 8, 2015; 116738
Christoph Heesen
Christoph Heesen
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Abstract: 79

Type: Invited

Abstract Category: Invited / Oral LB / Poster LB

With increasing effectiveness of MS treatments also the risk of side-effects and risk increase. Patient perceived risk and acceptance in MS has been paradigmaticly studied in progressive multifiocal leucencephalopathy (PML) due to natalizumab treatment. In Germany in 2009 (risk rate 1 in 1000) risk acceptance was higher in natalizumab treated patients than in their physicians which is nowadays (risk rate 4 in 1000) with quite similar at about 1:100. Many factors impact upon risk perception and acceptance. Assumed or perceived treatment efficacy is a major factor. Conjoint analysis studies have for example shown that for a treatment with a potential to improve MS a life-threatening risk of 1 in 100 is acceptable for patients, experimental stem cell transplantation being paradigmatic. Treatment expectations are a major predictors of treatment efficacy which challenges patient information on benefits and risks. However, unrealistic expectations of benefits and risk might be a major reason for incomplete treatment adherence which is as low as 34% for injectables in MS in Germany. Adherence rates and risk acceptance might be even higher in patients with more aggressive disease courses indicating that threat of MS is another major modulator of risk acceptance. It has not been clarified to which extend risk stratification or monitoring algorhythms as in natalizumab and alemtuzumab treatment impact on perceived and accepted risk. In clinical experience patients very differently handle these approaches. Some rely on their gut feeling and trust in their physicians while other try to figure out which exact risk rates they would still bear or not. Perceived risk and risk acceptance are part of the shared decision process between patients and physicians which needs continuous updating. Up-to-date validated and elaborate risk information is necessary to be available although not every patient is able and willing to process it.


C. Heesen has received research grants and speaker honoraries from the following companies: Biogen, Merck Serono, Genzyme, Novartis.

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