MS and uncertainty: developing a tool
- Start: October 2020
- Duration: 4 years
- Status: ongoing
Care providers tend to focus on the rational aspects concerning medicine use: what are the available options, what are the rates in terms of effectiveness and what are possible side-effects? There is not as much attention for the human aspects of having to live with a chronic disease and the uncertainty this brings with it, also when using medication. There is not enough room for the emotions, feelings and experiences of people with MS.
A tool could help MS patients and their caregivers with the use of medication. This tool should help recognise and acknowledge uncertainty. Part of the study is to determine what this tool should look like. For example, it could take the shape of an app, or a website, or a topic list for use in the consulting office or during a workshop.
Participants are recruited through three MS centres in the Netherlands. They are monitored for two years, with six measuring moments. These moments consist of consultations in the hospital and interviews. Based on the results and in collaboration with an MS centre, the tool will be developed and implemented in the third research year.
- Eva van Reenen
- Prof. Leo Visser (project leader)
- Prof. Carlo Leget
- Dr. Alistair Niemeijer
- Dr. Inge van Nistelrooij
- National MS Fund
This project is supported by funding through the National MS Fund.
Eva van Reenen, email@example.com.
A tool could help MS patients and their caregivers with the use of medication. This tool should help recognise and acknowledge uncertainty.