Patient autonomy in multiple sclerosis - Possible goals and assessment strategies

C. Heesen, S. Köpke, A. Solari, F. Geiger, J. Kasper

Research output: Contribution to journalArticle

Abstract

Patient autonomy has been increasingly acknowledged as prerequisite for successful medical decision making in Western countries. In medical decisions with a need to involve a health professional, patient autonomy becomes apparent in the extent of patients' participation in the communication as described in the concept of shared decision making. Patient autonomy can be derived from different perspectives or goals and the focus of evaluation approaches may vary accordingly. Multiple sclerosis (MS) is a paradigmatic disease to study patient autonomy mainly because MS patients are highly disease competent and due to ambiguous evidence on many aspects of disease-related medical decision making. This review gives an overview onmeasurement issues in studying decision making inMS, categorized according to prerequisites, processmeasures and outcomes of patient autonomy. As relevant prerequisites role preferences, risk attribution, risk tolerance, and risk knowledge are discussed. Regarding processes, we distinguish intra-psychic and interpersonal aspects. Intra-psychic processes are elucidated using the theory of planned behavior, which guided development of a 30-item scale to capture decisions about immunotherapy. Moreover, a theory of uncertainty management has been created resulting in the development of a corresponding measurement concept. Interpersonal processes evolving between physician and patient can be thoroughly analyzed from different perspectives by use of the newly developed comprehensive MAPPIN'SDM inventory. Concerning outcomes, besides health related outcomes, we discussmatch of preferred roles during the decision encounters (preference match), decisional conflict as well as an application of the multidimensional measure of informed choice to decisions of MS patients. These approaches provide an overview on patient-inherent and interpersonal factors and processes modulating medical decision making and health behavior in MS and beyond.

Original languageEnglish
Pages (from-to)2-9
Number of pages8
JournalJournal of the Neurological Sciences
Volume331
Issue number1-2
DOIs
Publication statusPublished - Sep 15 2013

Keywords

  • Complex interventions
  • Immunotherapy decision making
  • Multiple sclerosis
  • Patient autonomy
  • Risk communication
  • Shared decision making

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology

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