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Patient education program to enhance decision autonomy in multiple sclerosis relapse management: a randomized-controlled trial

Unit of Health Sciences and Education, University of Hamburg, Hamburg, Germany

J Kasper

Unit of Health Sciences and Education, University of Hamburg, Hamburg, Germany

I Mühlhauser

Unit of Health Sciences and Education, University of Hamburg, Hamburg, Germany

M Nübling

GEB, Gesellschaft für Empirische Beratung mbH, Denzlingen, Germany

C Heesen

Institute for Neuroimmunology and Clinical MS Research (INiMS), University Medical Center Hamburg-Eppendorf, Hamburg, Germany

Background

Contrary to strong recommendations for high-dose intravenous corticosteroid treatment for relapses in multiple sclerosis (MS), uncertainty remains about most aspects of relapse management. Oral corticosteroids administered by physicians or patients themselves or no corticosteroids also appear justifiable.

Objective

To evaluate an education program that aims to involve patients with MS in decisions on relapse management.

Methods

In three German MS centers, 150 patients with relapsing MS were randomly assigned to a single, 4-h group session or a standard information leaflet. The primary outcome measure was the proportion of relapses with oral or no corticosteroid therapy as an indicator of patient autonomy in treatment decision making. Other outcomes included perceived decision autonomy, quality of life, and disability status.

Results

In the intervention group (IG), 108/139 (78%) relapses were treated with oral or no corticosteroids compared with 101/179 (56%) in the control group; P < 0.0001. Patients’ perceived autonomy of treatment decision making was significantly higher in the IG; P < 0.0001. Quality of life, disability status, and adverse events of corticosteroid therapies were comparable.

Conclusion

The patient education program led to more autonomous decision making in patients with relapsing MS. Relevant changes in relapse management were observed.

Key Words: decision making • decision support technique • glucocorticoids • multiple sclerosis • patient education • patient participation

This version was published on January 1, 2009

Multiple Sclerosis, Vol. 15, No. 1, 96-104 (2009)
DOI: 10.1177/1352458508095921


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