gms | German Medical Science

Background: Multiple sclerosis (MS) particularly affects women between the ages 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. Our multiphase mixed-methods study aims to support WwMS in the decision-making process regarding motherhood. For the development of a decision support intervention and outcome measurements, insights on information and support needs of WwMS regarding MS and motherhood in Germany are needed.

Aim: The aim of this project stage is to develop, pilot-test and validate two questionnaires to explore knowledge as well as attitudes, worries and coping of WwMS regarding motherhood.

Methods: Based on the MRC framework of developing and evaluating complex interventions, we conducted a scoping review on motherhood and MS and performed qualitative interviews with WwMS and experts. Interviews addressed the experiences, information needs and worries of WwMS and experts’ perceptions of motherhood in MS. The interviews were analysed using qualitative thematic analysis. The results of our scoping review and qualitative interviews were used to revise and to develop two questionnaires addressing WwMS’ 1) attitudes, worries and coping strategies as well as 2) knowledge on motherhood in MS. Both questionnaires were qualitatively evaluated with think-aloud, refined and piloted in a web-based survey using Unipark advertised through newsletters and social media.

Results: Between January and November 2019, we conducted 3 focus groups (n=15) and individual interviews with WwMS (n=3) as well as experts (n=4). The analysis of the interviews with WwMS revealed that women often felt inadequately counselled by health professionals on MS and pregnancy, and some had received incorrect information. We identified information needs concerning immunotherapies, heredity, relapses and child health. Based on our results, a questionnaire was developed to measure attitude, worries and coping strategies (Likert-scaled with 42 items). Through the scoping review, one knowledge questionnaire could be found and was revised. We added 6 new questions (16 multiple-choice questions).

In total, 135 women with MS gave informed consent and started the survey between December 2019 and March 2020. Of those, 95 answered the knowledge questionnaire and where analysed. On average, the participants answered 8.46 questions correctly (53%, range 3-13). Questions about immunotherapies, relapses and breastfeeding were the most difficult. Further results will be presented at the conference.

Discussion: Our results highlight the need of evidence-based information and support regarding motherhood choice in MS. The questionnaires will be revised and tested for validity in a lager survey in Germany and subsequently in a multinational survey. This will provide further insights into MS and motherhood in an international context.

Practical implications: The survey provides information on knowledge, experiences, worries and needs regarding motherhood and MS in Germany and the developed questionnaires can be used to evaluate interventions.