Decisional role preferences, risk knowledge and information interests in patients with multiple sclerosis.
OBJECTIVE
Shared decision making is increasingly recognized as the ideal model of patient-physician communication especially in chronic diseases with partially effective treatments as multiple sclerosis (MS). To evaluate prerequisite factors for this kind of decision making we studied patients' decisional role preferences in medical decision making, knowledge on risks, information interests and the relations between these factors in MS.


METHODS
After conducting focus groups to generate hypotheses, 219 randomly selected patients from the MS Outpatient Clinic register (n = 1374) of the University Hospital Hamburg received mailed questionnaires on their knowledge of risks in MS, their perception of their own level of knowledge, information interests and role preferences.


RESULTS
Most patients (79%) indicated that they preferred an active role in treatment decisions giving the shared decision and the informed choice model the highest priority. MS risk knowledge was low but questionnaire results depended on disease course, disease duration and ongoing immune therapy. Measured knowledge as well as perceived knowledge was only weakly correlated with preferences of active roles. Major information interests were related to symptom alleviation, diagnostic procedures and prognosis.


CONCLUSIONS
Patients with MS claimed autonomous roles in their health care decisions. The weak correlation between knowledge and preferences for active roles implicates that other factors largely influence role preferences.
Heesen
Christoph
C
Department of Neurology, University Hospital Eppendorf, Hamburg, Germany. heesen@uke.uni-hamburg.de
Kasper
Jürgen
J
Segal
Julia
J
Köpke
Sascha
S
Mühlhauser
Ingrid
I
D000328:Adult; D001294:Attitude to Health; D003625:Data Collection; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000453:epidemiology / Q000523:psychology*; D010353:Patient Education as Topic; D010358:Patient Participation; D012306:Risk; D011795:Surveys and Questionnaires