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280 Involvement of multiple myeloma patients in decisions on treatment and care: an online survey
  1. Charlotte Verbeke1,
  2. Elise Schoefs1,
  3. Jolien Broekmans1,
  4. Silène Ten Seldam2,
  5. Kate Morgan2,
  6. Katie Joyner2,
  7. Eilidh Duncan2,
  8. Ariel Aviv3,
  9. Varda Shoham4,
  10. Michel Delforge5,
  11. Anneleen Vanhellemont5,
  12. Rosanne Janssens1,
  13. Isabelle Huys1
  1. 1Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium
  2. 2Myeloma Patients Europe, Brussels, Belgium
  3. 3Department of Hematology, Ha’Emek medical center, Afula, Israel
  4. 4AMEN association, Kiron, Israel
  5. 5Department of Hematology, University Hospital Leuven, Leuven, Belgium


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.

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