Universität zu Köln

Schneider, A., Fasshauer, E., Scheiderbauer, J., Warnke, C., Koepke, S., Kasper, J., Toussaint, M., Temmes, H., Hemmer, B., Schiffmann, I, Rahn, A. C. and Heesen, C. (2022). Development and evaluation of evidence-based patient information handbooks about multiple sclerosis immunotherapies. Mult. Scler. Relat. Disord., 60. OXFORD: ELSEVIER SCI LTD. ISSN 2211-0356

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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.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Schneider, A. UNSPECIFIED UNSPECIFIED UNSPECIFIED Fasshauer, E. UNSPECIFIED UNSPECIFIED UNSPECIFIED Scheiderbauer, J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Warnke, C. UNSPECIFIED UNSPECIFIED UNSPECIFIED Koepke, S. UNSPECIFIED UNSPECIFIED UNSPECIFIED Kasper, J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Toussaint, M. UNSPECIFIED UNSPECIFIED UNSPECIFIED Temmes, H. UNSPECIFIED UNSPECIFIED UNSPECIFIED Hemmer, B. UNSPECIFIED UNSPECIFIED UNSPECIFIED Schiffmann, I UNSPECIFIED UNSPECIFIED UNSPECIFIED Rahn, A. C. UNSPECIFIED UNSPECIFIED UNSPECIFIED Heesen, C. UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-689706
DOI:	10.1016/j.msard.2022.103728
Journal or Publication Title:	Mult. Scler. Relat. Disord.
Volume:	60
Date:	2022
Publisher:	ELSEVIER SCI LTD
Place of Publication:	OXFORD
ISSN:	2211-0356
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language Clinical Neurology Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/68970