Evidence-based patient information about treatment of multiple sclerosis--a phase one study on comprehension and emotional responses.
OBJECTIVE
This study analysis the comprehension and emotional responses of people suffering from multiple sclerosis when provided with an evidence-based information module. It is a core module of a comprehensive decision aid about immunotherapy. The core module is designed to enable patients to process scientific uncertainty without adverse effects. It considers existing standards for risk communication and presentation of data.


METHODS
Using a mailing approach we investigated 169 patients with differing courses of disease in a before-after design. Items addressed the competence in processing relative and absolute risk information and patients' emotional response to the tool, comprising grade of familiarity with the information, understanding, relevance, emotional arousal, and certainty.


RESULTS
Overall, numeracy improved (p < 0.001), although 99 of 169 patients did not complete the numeracy task correctly. Understanding depended on the relevance related to the course of disease. A moderate level of uncertainty was induced. No adverse emotional responses could be shown, neither in those who did comprehend the information, nor in those who did not develop numeracy skills.


CONCLUSIONS
In conclusion, the tool supports people suffering from multiple sclerosis to process evidence-based medical information and scientific uncertainty without burdening them emotionally.


CONCLUSIONS
This study is an example for the documentation of an important step in the development process of a complex intervention.
Kasper
Jürgen
J
Unit of Health Sciences and Education, University of Hamburg, Martin Luther King Platz 6, 20146 Hamburg, Germany. k@sper.info
Köpke
Sascha
S
Mühlhauser
Ingrid
I
Heesen
Christoph
C
D000328:Adult; D001294:Attitude to Health; D003142:Communication; D032882:Comprehension; D003661:Decision Support Techniques; D004644:Emotions; D019317:Evidence-Based Medicine / Q000458:organization & administration*; D005260:Female; D017144:Focus Groups; D006801:Humans; D007167:Immunotherapy / Q000009:adverse effects / Q000379:methods / Q000523:psychology; D008297:Male; D016743:Mental Competency; D008875:Middle Aged; D009042:Motivation; D009103:Multiple Sclerosis / Q000523:psychology / Q000628:therapy; D020380:Needs Assessment; D010353:Patient Education as Topic / Q000458:organization & administration*; D015397:Program Evaluation; D018570:Risk Assessment; D040242:Risk Reduction Behavior; D020377:Self Efficacy; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D035501:Uncertainty