Development and feasibility testing of a decision aid and a decision coaching programme on motherhood choice in multiple sclerosis - a mixed methods study
Final Report Abstract
The aim of the mixed-methods study was to develop and test the feasibility of a web-based Decision Support Tool (DST) and a Decision Coaching Programme (DCP) for women with multiple sclerosis (wwMS) considering pregnancy. Both programmes aim to support wwMS in their decision-making process about motherhood choice. The DST consists of a web-based decision aid (DA) and a decision guide (DG) on motherhood choice in MS. The DCP is based on the web-based DA, a decision coaching session offered by a trained MS nurse and moderation cards including information to follow six shared decision-making steps. The feasibility testing consisted of two steps: alpha testing and beta testing. In the alpha testing, prototypes of the components of the two programmes were tested for practicability and acceptance in an iterative process with wwMS and experts using qualitative and quantitative methods. In the beta testing, both programmes were tested under real-life conditions in a randomised pilot study which was accompanied by a process evaluation. The alpha testing was conducted between April and June 2021 and during this step, the components of the DST and DCP were continuously improved based participants' feedback. Two focus groups (n=7) and personal interviews with wwMS (n=1) and experts (n=5) were conducted. First, experts assessed the DA and the DG, followed by wwMS. The results indicated that both programmes were practicable and acceptable for wwMS. The expert feedback was satisfactory overall. Some experts found the DA generally good but were critical about if the DA is helpful for all wwMS. Women's feedback on the DA and DG was good. The decision coaching and the moderation cards were tested within the research team and with an MS nurse. The nurse found the DCP comprehensive and understandable for wwMS. Based on the feedback of the experts, wwMS and MS nurse, the programmes were finalised. Two nurses were trainend in the digital decision coach training course in September 2021. The randomised pilot study was performed between November 2021 and February 2022. In total, 36 wwMS were recruited and randomised, 23 into the DST group and 13 into the DCP group. Follow-up data is available for 30 wwMS (additional data are expected for 1 wwMS). The descriptive data suggests that there is a lower level of decisional conflict and a higher level of knowledge about motherhood in MS in both groups after using the DCP or the DST. Quantitative and qualitative data confirmed the feasibility of the DST and DCP and indicated good acceptance, usability and comprehensibility in both groups. The women’s feedback in the DCP group was more positive compared to the DST group and indicates that the decision coaching was very important for wwMS. Additionally, data suggests that the DCP might add more certainty and clarity to decision-making. Thus, decision coaching on motherhood choice in MS seems to be a promising concept and should be further investigated in a randomised controlled trial after some modifications (e.g. updating the DA).
Publications
- (2020). Motherhood choice in multiple sclerosis (MoMS). Development and piloting of two questionnaires. 19. Deutscher Kongress für Versorgungsforschung (DKVF); Deutsches Netzwerk Versorgungsforschung; 30.09.-01.10.2020, sine loco [digital]. Germany
Peper J., Steinberg L., Gold M.S., Köpke S, Heesen C., Rahn A.C.
- (2021). Informations- und Unterstützungsbedarf von Frauen mit Multipler Sklerose zum Thema Mutterschaft – eine Bedarfsanalyse. 19. Jahrestagung des Deutschen Netzwerks Evidenzbasierte Medizin; Who cares? – EbM und Transformation im Gesundheitswesen; Deutsches Netzwerk Evidenzbasierte Medizin e.V., 24.-26.02.2021,sine loco [digital]. Germany
Peper J., Steinberg L., Köpke S, Gold M.S., Heesen C., Rahn A.C.
(See online at https://doi.org/10.3205/21ebm052) - (2022). Decision Coaching zu Gesundheitsentscheidungen - aktuelle Erkenntnisse und Praxisbeispiele - Ein Symposium des Fachbereichs "Patienteninformation & -beteiligung". 23. Jahrestagung des Deutschen Netzwerks Evidenzbasierte Medizin; Evidenzbasierte Medizin für eine bedarfsgerechte Gesundheitsversorgung; Deutsches Netzwerk Evidenzbasierte Medizin e.V., 01.-03.09.2022, Lübeck. Germany
Köpke S., Sommer C.G., Wagner-Ulrich C., Stolz C., Kaden J., Peper J., Berger-Höger B., Rahn A. C.
(See online at https://doi.org/10.3205/22ebm168) - (2022). Qualitative Machbarkeitstestung eines webbasierten Decision Support Tools für Frauen mit Multipler Sklerose zum Thema Mutterschaft. 23. Jahrestagung des Deutschen Netzwerks Evidenzbasierte Medizin; Evidenzbasierte Medizin für eine bedarfsgerechte Gesundheitsversorgung; Deutsches Netzwerk Evidenzbasierte Medizin e.V., 01.-03.09.2022, Lübeck. Germany
Stahl L., Peper J., Köpke S, Heesen C., Rahn A.C.
(See online at https://doi.org/10.3205/22ebm123)
