Project Launch: May 2022

This project aims to develop our understanding of information and shared decision making in myeloma. The project will examine, from a patient perspective: What do health care professionals need to know? How do patients with myeloma and their families want to be involved in treatment decision making? What would help? What is working? Are there any examples of good practice which could be modelled and disseminated across Europe?


This study will work over two phases:


Phase one: Currently recruiting.

Eligibility criteria: Patients and/or clinicians living in one of the following countries: United Kingdom, Ireland, Israel, Slovenia, Germany, Sweden, Spain, Belgium and the Netherlands.

Qualitative interviews with patients and healthcare professionals to examine positive and best practice experiences in decision-making. Findings from this phase one will inform a quantitative survey on decision-making.


Phase two: Predicted to begin in February

Eligibility criteria: TBD

A short quantitative survey on shared decision-making. Survey questions will be developed as themes emerge from the first phase of the project.


The outputs of this project will advance and expand our understanding of shared decision-making in practice and provide a set of recommendations for best practices in shared decision-making from a patient perspective.


This project will be managed by MPE and conducted by KU Leuven and Amen.


If you would like to participate in this research, please email and we will be in touch on whether you meet the eligibility criteria.


KU Leuven logo
AMEN logo