Autonomy preferences, risk knowledge and decision-making performance in multiple sclerosis patients
 
Why the AutoMS project ?

The provision of patient-centered care is a key element of a high quality health care system, along with the use of the best available evidence. Expert, self-managing patients are increasingly considered a goal in health management. But clinicians often underestimate patients' preferences to be involved in clinical decisions. Decisions about disease-modifying treatment in MS are preference-sensitive, i.e. they require weighing of patients' values for benefits and harms across options, including the option to refrain from therapy. Especially with recently emerging treatments, which are highly effective but have considerable side-effects, risk communication and shared-decision-making has become more and more important.

Main objectives

This international collaborative project (Autonomy Preferences, Risk Knowledge and Decision-making Performance in MS Patients, AutoMS) will prospectively evaluate preferences of MS patients regarding participation in medical decision-making and their determinants across six European countries with an associated partner in Australia, using shared methodologies and validated assessment tools. We will focus on most relevant decisions about disease-modifying treatment.

  Three lines

AutoMS-Preference: We will linguistically validate the Control Preference Scale (CPS) in the participating countries, revise cartoons and migrate the interview-based version into an electronic self-administered version (eCPS). CPS revision and migration was planned, and will be conducted with permission and in cooperation with instrument's author Prof. L. Degner, University of Manitoba, Canada.
AutoMS-Risk knowledge: By consensus on relevant risk knowledge for relapsing-remitting (RR) MS patients and based on previous tools, we will produce and validate a risk knowledge questionnaire for RRMS patients (RRMS-IRKQ).
AutoMS-Decision making: We will assess the patient-physician relationship on first out-patient consultations. The quality of the patient-physician interaction will be assessed on audio-taped transcripts with the Observing Patient Involvement (OPTION) scale and with the newly-devised Multifocal Approach to the Sharing in the Shared Decision-making (MAPPIN'SDM). The influence of patient's and physician's characteristics and of patient's preferred involvement role (as assessed by the CPS) will be determined. Based on the theory of planned behavior, we will also explore patients' cognitive processes leading to treatment decision-making.
Basic work will be performed in Hamburg and Milan, while instruments will be prospectively validated in six languages: German, Italian, Dutch, French, Serbian, and Estonian.

     

Acknowledgment: Hertie Foundation (Germany, grant to Prof. C. Heesen) and Fondazione Italiana Sclerosi Multipla (FISM, Italy – grant to Dr. A. Solari) granted the project. Dr. Giordano was supported by a research fellowship FISM.

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