gms | German Medical Science

Background: Pregnancy is an important issue for many women with multiple sclerosis (wwMS) as the disease is often diagnosed around the age of 30. Thus, we developed a web-based decision support tool (DST) and a Decision Coaching Programme (DCP) for wwMS considering pregnancy to support their decision-making process. The DST consists of a decision aid and a decision guide on motherhood in MS. The DCP consists of the DA and a coaching session provided by a trained nurse.

Aim: To evaluate the feasibility and acceptability of DST and DCP and to explore the potential additional benefit of the DCP added to the decision aid.

Methods: We followed the MRC framework for developing and evaluating complex interventions. We tested the feasibility of the DST with wwMS, an expert patient and MS experts. The DCP’s acceptability was assessed within the research team and with an MS nurse. Qualitative (interviews) and quantitative methods (questionnaires) were applied. After revision, we evaluated the DST and DCP in a randomised pilot study with process evaluation. We recruited wwMS considering pregnancy and trained 2 nurses for the DCP. We measured decisional conflict (DCS; 0-100 scale; lower values indicate a higher decisional conflict) in wwMS as explorative primary outcome. In the DCP group, involvement in decision making was analysed using MAPPIN'SDM. For the process evaluation, we collected information via questionnaires and conducted interviews with the nurses and wwMS to gain in-depth information regarding programme’s feasibility. All interviews were recorded, transcribed and analysed using qualitative thematic analysis. Questionnaires were analysed descriptively.

Results: We conducted 2 focus groups (n=7), and 1 individual interview with wwMS and 5 expert interviews. Results indicate that the DST and DCP are feasible and acceptable for wwMS.

We recruited 36 wwMS and randomised them unequally (DST n= 23; DCP n= 13). Follow-up data were available for 29 wwMS (DST n=20; DCP n=10). The mean DCS score at baseline was 51 in the DCP group and 44 in the DST group. After the programme, the mean DCS score was 83 in the DCP group and 66 in the DST group, indicating more certainty in decision-making. For the DCP group, MAPPIN’SDM assessment showed good levels of involvement. 11 individual interviews were conducted with wwMS (DST n=5; DCP n=6). Both programmes were described as user friendly. Results suggest that the DCP group was more satisfied, and that the decision coaching was important for the decision-making process. Nurses stated that they appreciated their new role and received positive feedback from wwMS.

Discussion: Both the DST and DCP are feasible and acceptable for wwMS. The DCP requires more resources, but might provide more confidence and clarity in the decision-making process than the DST alone and might offer an attractive role for MS nurses.

Practical implications: Our study provides the first results of the potential of two decision support programmes on motherhood choice in MS. In this respect, our findings can contribute to support for wwMS considering pregnancy.

Appeal for practice (science and/or care) in one sentence: The effectiveness of the DST and DCP should be evaluated in a randomised controlled trial.

Funding: DFG-Nachwuchsakademie Versorgungsforschung; RA 3296/1-1