Article Text
Abstract
Introduction Involving patients with multiple myeloma (MM) in decisions surrounding their treatment and care is increasingly recognized as important. However, uncertainties exist regarding how patients want to be involved. This study aimed to i) provide insights on if, how and to what extent MM patients want to be involved and informed, ii) determine whether they already know the concept shared decision making (SDM), and iii) identify ways to improve patient involvement in the treatment and care decisions in MM.
Methods An online survey for MM patients, building upon previously conducted interviews, was created in 8 different languages (Dutch, French, Spanish, Hebrew, German, Swedish, Slovenian, and English) and launched on the 4th of October 2023. The survey was disseminated through MM patient organizations. Preliminary data was analyzed descriptively and qualitatively. In parallel, a survey for healthcare professionals (HCPs) involved in the treatment of MM was launched.
Results In the first two months of the recruitment, 380 fully completed surveys were obtained. Most patients live in the Netherlands (41%), Belgium (21%), Sweden (13%) and Germany (11%). Almost all patients (97%) indicated that they want to be involved in their MM treatment and care decision-making processes. Patients indicating not wanting to be involved selected as main reasons: ‘I do not know if I have enough knowledge to decide’ and ‘I am used to the healthcare professional deciding’. 39% of the patients had previously heard about the concept of SDM.
Discussion Preliminary findings show that most patients want to be involved. More than half did not know the concept of SDM.
Conclusion(s) Preliminary results underline the importance of individualized patient involvement that considers the individual needs and preferences of patients. The final results from both surveys (patients and HCPs) aim to formulate recommendations to improve patient involvement in MM clinical practice.