Development and evaluation of evidence-based patient information handbooks about multiple sclerosis immunotherapies

A Schneider; E Fasshauer; J Scheiderbauer; C Warnke; S Köpke; J Kasper; M Toussaint; H Temmes; B Hemmer; I Schiffmann; A C Rahn; C Heesen

doi:10.1016/j.msard.2022.103728

Development and evaluation of evidence-based patient information handbooks about multiple sclerosis immunotherapies

Mult Scler Relat Disord. 2022 Apr:60:103728. doi: 10.1016/j.msard.2022.103728. Epub 2022 Mar 10.

Authors

A Schneider¹, E Fasshauer², J Scheiderbauer³, C Warnke⁴, S Köpke⁵, J Kasper⁶, M Toussaint⁷, H Temmes², B Hemmer⁸, I Schiffmann⁷, A C Rahn⁹, C Heesen⁷

Affiliations

¹ Institute of Neuroimmunology and Multiple Sclerosis, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany; Department of Neurology, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany. Electronic address: anne.schneider@stud.uke.uni-hamburg.de.
² Deutsche Multiple Sklerose Gesellschaft, Bundesverband e.V. (German MS Society Federal Association [DMSG]), Hannover, Germany.
³ Stiftung für Selbstbestimmung und Selbstvertretung von MS-Betroffenen, Trier, Germany.
⁴ Department of Neurology, University Medical Centre Cologne, Cologne, Germany.
⁵ Institute of Nursing Sciences, University of Cologne, Faculty of Medicine and University Medical Centre Cologne, Cologne, Germany.
⁶ Institute of Nursing Sciences and Health Promotion, Faculty of Health Sciences, OsloMet, Metropolitan University, Oslo, Norway.
⁷ Institute of Neuroimmunology and Multiple Sclerosis, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany; Department of Neurology, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany.
⁸ Department of Neurology, Faculty of Medicine of the Technical University of Munich, Rechts der Isar Hospital, Munich, Germany; Munich Cluster for Systems Neurology (SyNergy), Munich, Germany.
⁹ Nursing Research Unit, Institute of Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany.

PMID: 35290898
DOI: 10.1016/j.msard.2022.103728

Abstract

Background: Multiple sclerosis treatment options are increasing. Evidence-based patient information (EBPI) are therefore crucial to enable patient involvement in decision making. Based on earlier work on decision support, patient information handbooks on 8 MS immunotherapies were developed, piloted and evaluated with support from the German Clinical Competence Network MS and the German MS Society.

Methods: Handbooks were structured according to EBPI concepts. Drafts were commented by patient representatives and neurologists with an MS expertise. Executive boards of the German MS Society and the Competence Network as well as pharmaceutical companies' feedback was included. Handbooks were distributed among MS neurologists by the German MS Society. Evaluation followed applying a mixed methods approach with interviews, focus groups and surveys. One survey addressed persons with MS (pwMS) based on a questionnaire included in each handbook. Neurologists who received printed patient handbooks were invited to give feedback in a second survey.

Results: Eight handbooks were developed providing absolute and relative risk information in numbers and figures as well as monitoring needs and drug fact boxes. Despite the high amount of information and the display of low absolute risk reduction rates of treatments, handbooks were overall appreciated by pwMS (n=107) and mostly also by physicians (n=24). For more than 70% of the pwMS the information was new, understandable and supportive for decision making. But patients felt uncomfortable with relative risk information. However, response rates in the evaluation were low, exposing the challenges when implementing EBPI into clinical care. Therefore, conclusions must be considered preliminary.

Conclusion: EBPI on immunotherapies for MS seem feasible and are appreciated by patients and treating neurologists but more implementation research is needed.

Keywords: DMTs; absolute risk reduction; evidence-based patient information; multiple sclerosis; shared decision making.

MeSH terms

Focus Groups
Humans
Immunotherapy
Multiple Sclerosis* / drug therapy
Neurologists
Surveys and Questionnaires