Universität zu Köln

Steinberg, Lea ORCID: 0000-0002-3227-9638, Peper, Julia, Koepke, Sascha, Solari, Alessandra, Giordano, Andrea ORCID: 0000-0003-4466-9788, Gold, Stefan M., Hellwig, Kerstin, Heesen, Christoph and Rahn, Anne Christin (2022). Motherhood choice in multiple sclerosis (MoMS) development and piloting of patient-reported outcome measures. Mult. Scler. Relat. Disord., 63. OXFORD: ELSEVIER SCI LTD. ISSN 2211-0356

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Abstract

Background: Multiple sclerosis (MS) particularly affects women between the age of 20 and 40. Therefore, pregnancy is often an important issue for women with MS (wwMS), but misunderstandings, misinformation, and uncertainties about MS and pregnancy are common. We developed and pilot-tested two questionnaires, one on knowledge (MCKQ), and one on attitudes, coping strategies and worries (MPWQ) of wwMS regarding pregnancy.Methods: This mixed-methods study followed the MRC framework for the development and evaluation of complex interventions. Two questionnaires were developed based on an earlier questionnaire and a qualitative study, cognitively debriefed and pilot tested in a web-based survey. Qualitative data were analysed using the-matic analysis. The psychometric analysis included item difficulty and reliability (for both questionnaires), convergent validity assessment and exploratory factor analysis (EFA) (for MPWQ).Results: The qualitative study (three focus groups and interviews with 15 wwMS overall and interviews with 4 experts) revealed several topics requiring evidence-based decision support. A multidisciplinary panel produced the 16-item MCKQ and the 39-item MPWQ. The cognitive debriefing of both questionnaires went smoothly. Of 128 wwMS who approached the survey, 95 (74%) completed the MCKQ and 89 (70%) the MPWQ. The mean age of wwMS was 36.7 years, 88% had a relapsing MS, and 32% had no children. Item difficulty, reliability and convergent validity were acceptable for both questionnaires. The EFA did not confirm the three-scale structure (attitude, worries and coping).Conclusion: The developed questionnaires fill a gap in self-reported measures of knowledge (MCKQ) and atti-tudes, worries, and coping strategies (MPWQ) of wwMS regarding motherhood. Further refinement of the MPWQ and validation in a larger sample is warranted before its large-scale use.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Steinberg, Lea UNSPECIFIED orcid.org/0000-0002-3227-9638 UNSPECIFIED Peper, Julia UNSPECIFIED UNSPECIFIED UNSPECIFIED Koepke, Sascha UNSPECIFIED UNSPECIFIED UNSPECIFIED Solari, Alessandra UNSPECIFIED UNSPECIFIED UNSPECIFIED Giordano, Andrea UNSPECIFIED orcid.org/0000-0003-4466-9788 UNSPECIFIED Gold, Stefan M. UNSPECIFIED UNSPECIFIED UNSPECIFIED Hellwig, Kerstin UNSPECIFIED UNSPECIFIED UNSPECIFIED Heesen, Christoph UNSPECIFIED UNSPECIFIED UNSPECIFIED Rahn, Anne Christin UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-688564
DOI:	10.1016/j.msard.2022.103831
Journal or Publication Title:	Mult. Scler. Relat. Disord.
Volume:	63
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 DECISION-MAKING; KNOWLEDGE; WOMEN; PREGNANCY Multiple languages Clinical Neurology Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/68856