OBJECTIVES: The inclusion of patient preferences in treatment decision making via shared decision making (SDM) is increasingly considered important in oncology. On such setting is multiple myeloma (MM), in which complex trade-offs must be made. This study aimed to identify the needs and experiences of stakeholders regarding SDM in MM clinical practice.

METHODS: This qualitative study consisted of semi-structured interviews with patients (n=39) and healthcare professionals (HPCs) (n=20) including hematologists, oncology nurses, and trajectory counselors in Belgium, Germany, Ireland, Israel, Slovenia, Spain, Sweden, The Netherlands, and the United Kingdom. Interviews were thematically analyzed using the framework method. Patients and HCPs were involved as researchers and provided substantial input throughout the different steps of the study.

RESULTS: The ideal level of involvement in SDM differed for each patient. While some patients only wanted to be minimally involved, others wanted to make the final treatment decision themselves. Patients and HCPs across countries discussed different levels of notions and conceptualizations regarding the term and application of SDM. While some participants considered SDM to be a known concept, others had never heard about it. HCPs could not provide a definition of SDM in line with literature. Depending on the HCP and country, the different steps of SDM were applied to varying extent. Although some barriers for SDM were country-specific, general barriers such as time constraints, a perceived lack of treatment options, and a lack of openness of HCPs to involve patients could be identified.

CONCLUSIONS: This study shows that SDM should be applied in a patient-individualized way considering that not all MM patients have a desire to be involved in the SDM process. Specific guidelines regarding the concrete application for SDM in MM should be developed. Further quantitative research would be useful to complement this study and determine associations between patient characteristics and patients’ ideal level of involvement.