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Suspected multiple sclerosis – what to do? Evaluation of a patient information leaflet

Institute of Neuroimmunology and Clinical MS Research (inims), University Medical Center Hamburg-Eppendorf, Martinistrasse, Hamburg, Germanyheesen{at}uke.uni-hamburg.de

N Schäffler

Institute of Neuroimmunology and Clinical MS Research (inims), University Medical Center Hamburg-Eppendorf, Martinistrasse, Hamburg, Germany

J Kasper

Institute of Neuroimmunology and Clinical MS Research (inims), University Medical Center Hamburg-Eppendorf, Martinistrasse, Hamburg, Germany; Department of Health Sciences, University of Hamburg, Martin-Luther-King-Platz, Hamburg, Germany

I Mühlhauser

Department of Health Sciences, University of Hamburg, Martin-Luther-King-Platz, Hamburg, Germany

S Köpke

Institute of Neuroimmunology and Clinical MS Research (inims), University Medical Center Hamburg-Eppendorf, Martinistrasse, Hamburg, Germany; Department of Health Sciences, University of Hamburg, Martin-Luther-King-Platz, Hamburg, Germany

Background

Parallel to the establishment of early treatments in multiple sclerosis (MS), new diagnostic criteria have made an earlier diagnosis possible. While there is ongoing discussion about possible benign courses and only partial effective treatments, there have been no attempts today to facilitate shared decision making on diagnostic testing between patients with suspected MS and their physicians.

Objective

This study describes the development and validation process of a leaflet to be presented to people with suspected MS to engage them in a diagnostic decision-making process.

Methods

After a qualitative study showing acceptability among five patients, the leaflet was presented to a retrospective cohort (n = 87 of which 70 replied)) of patients being diagnosed within the last 2 years as well to a prospective cohort of n = 51 patients with symptoms suggestive of MS.

Results

Approximately 70% of patients in the prospective as well as in the retrospective cohort wanted to be informed about a possible MS before testing, whereas 10% did not. The leaflet did not seem to elicit anxieties. The attitude to undergo diagnostic testing was not influenced by the leaflet, which can be explained by the nonexperimental design of the study.

Conclusion

Taken together, our findings demonstrate that early information about possible MS is warranted by patients and does not show negative side effects. Further studies on evidence-based patient information in early MS seem necessary.

Key Words: anxieties • diagnostic tests • evidence based patient information • multiple sclerosis • shared decision making

This version was published on September 1, 2009

Multiple Sclerosis, Vol. 15, No. 9, 1103-1112 (2009)
DOI: 10.1177/1352458509106508


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