Development and feasibility testing of a decision aid and a decision coaching programme on motherhood choice in multiple sclerosis - a mixed methods study

• Applicant: Professorin Dr. Anne Christin Rahn
• Subject Area: Public Health, Healthcare Research, Social and Occupational Medicine
• Term: from 2019 to 2021
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 417748656

Multiple sclerosis (MS) is a chronic disease that mainly affects women and frequently starts between the age of 20 and 40 years. Therefore, motherhood choice is a highly relevant topic with many associated questions such as how to deal with immunotherapies, whether a pregnancy affects the course of the disease and whether MS is transmitted to children.The goal of this programme is the development and feasibility testing of a decision support tool and decision coaching programme on pregnancy for women with MS.A mixed-method study, based on the concept of developing and evaluating complex interventions, will be conducted. In the first step, the programme will be developed and subsequently a feasibility test will be carried out using qualitative methods followed by a non-randomised pilot study.The decision support tool and the coaching programme will be developed on the basis of already evaluated programmes - a web-based information platform on immunotherapies and a decision coaching programme on immunotherapies. An evidence-based patient information (EBPI) will be developed targeting the above mentioned topics. The EBPI will be supplemented by a further component: either a newly developed decision aid (decision support tool) or a nurse-led decision coaching programme. Physicians, MS-Nurses with coaching experience and experts patients will be involved in the development.The feasibility test is understood as a test of the practicability and acceptance of the content and takes place in two steps.1) Qualitative feasibility testing: The decision support tool and the coaching programme will be evaluated with selected MS Nurses, physicians, expert patients and women with MS using qualitative methods (think-aloud, teach-back) and will be continuously refined based on the feedback.2) Non-randomised pilot study: Recruitment for the pilot study will take place in 4 MS centres. First, the decision support tool will be evaluated. 16 women will have access to the EBPI for 2 weeks and will then be asked to fill out a questionnaire and to take part in an interview by telephone. Subsequently, the decision coaching programme approach will be evaluated. Two nurses will receive the training programme for decision coaching. Subsequently, each Nurse will counsel 8 women with MS from different centres via telephone or web conference. Women will gain access to the EBPI prior to the coaching. They will complete questionnaires after the coaching session and will be interviewed by telephone.As a key endpoint, the decisional conflict in both groups will be exploratively surveyed. Qualitative data will be analysed thematically.Based on the results, it can be decided which approach is the most promising (decision coaching programme or decision support tool) or whether both approaches should be pursued further in a future RCT, aiming to evaluate the programmes’ possible benefits.

• DFG Programme: Research Grants