Institute for Neuroimmunology and Multiple Sclerosis, University Medical Centre Hamburg-Eppendorf, Martinistraße 52, Hamburg D-20246, Germany.
Institute or Social Medicine and Epidemiology, Nursing Research Unit, University of Lübeck, Ratzeburger Allee 160, Lübeck D-23538, Germany.
Mult Scler Relat Disord. 2022 Jul;63:103831. doi: 10.1016/j.msard.2022.103831. Epub 2022 Apr 27.
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.
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 thematic analysis. The psychometric analysis included item difficulty and reliability (for both questionnaires), convergent validity assessment and exploratory factor analysis (EFA) (for MPWQ).
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).
The developed questionnaires fill a gap in self-reported measures of knowledge (MCKQ) and attitudes, 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.
多发性硬化症（MS）特别影响 20 至 40 岁之间的女性。因此，怀孕通常是 MS 女性（wwMS）的一个重要问题，但对 MS 和怀孕的误解、错误信息和不确定性很常见。我们开发并试点测试了两个问卷，一个是关于知识的（MCKQ），另一个是关于 wwMS 对怀孕的态度、应对策略和担忧的（MPWQ）。
这项混合方法研究遵循了 MRC 对复杂干预措施的开发和评估框架。这两个问卷是基于早期的问卷和一项定性研究开发的，经过认知审查，并在基于网络的调查中进行了试点测试。定性数据采用主题分析进行分析。心理测量分析包括项目难度和可靠性（两个问卷都有）、收敛有效性评估和探索性因素分析（EFA）（MPWQ）。
定性研究（三个焦点小组和 15 名 wwMS 的访谈，以及 4 名专家的访谈）揭示了一些需要循证决策支持的主题。一个多学科小组制作了 16 项 MCKQ 和 39 项 MPWQ。两个问卷的认知审查都进行得很顺利。在 128 名接触调查的 wwMS 中，95 名（74%）完成了 MCKQ，89 名（70%）完成了 MPWQ。wwMS 的平均年龄为 36.7 岁，88%患有复发型 MS，32%没有孩子。两个问卷的项目难度、可靠性和收敛有效性都可以接受。EFA 并没有证实三个量表结构（态度、担忧和应对）。
所开发的问卷填补了 wwMS 对母性的知识（MCKQ）和态度、担忧和应对策略（MPWQ）自我报告措施的空白。在大规模使用之前，需要进一步改进 MPWQ 并在更大的样本中进行验证。
