Understanding the Importance of Outcome Information in Multiple Myeloma Treatment Decisions
Discover why presenting outcome information is crucial in making informed decisions for Multiple Myeloma treatment. Explore communication, decision-making, and ways to enhance patient involvement based on real-world data.
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Why the presentation of outcome information is indispensable in making treatment decisions for Multiple Myeloma (#74) Mirjam Garvelink PhD m.garvelink@antoniusziekenhuis.nl @MMGarvelink #EHMA2020 #EHMA2020
Mr. K has MM @MMGarvelink #EHMA2020 #EHMA2020
Shared Decision Making (SDM) SDM #EHMA2020 #EHMA2020 @MMGarvelink
Value based healthcare (VBHC) VBHC improvement cycle 1 Afbeeldingsresultaat voor medical expert team cartoon Collect & compare data Expert team 3 Outcome information 2 Implement improvements Analyse differences Quality improvement
VBHC & SDM VBHC improvement cycle 1 Afbeeldingsresultaat voor medical expert team cartoon Collect & compare data Clinical encounter Expert team 3 Outcome information 2 Implement improvements Analyse differences Quality improvement SDM
Aim To explore communication, information exchange and decision-making, and how this can be improved with (real world) outcome information. @MMGarvelink #EHMA2020 #EHMA2020
Methods Data collection Two focus groups with 11 patients (91% male, 71 years old) and 10 caregivers (89% partners) Audio taped, transcribed verbatim Topics discussed Treatment decision-making Communication & use of outcome information Data analysis Double coded (open) Thematically categorised Memberchecks #EHMA2020 #EHMA2020 @MMGarvelink
Results (1): Decision-making Few option awareness Few involvement in DM (implicit) Participants want to be involved but lack knowledge/confidence Trust in hematologist #EHMA2020 #EHMA2020 @MMGarvelink
Results (2): Outcome information Good, reliable information from hematologist Experience of hematologist (RW) Scientific evidence Goals of outcome information Outcomes required Prognosis, effectiveness & side effects meds, QOL, daily/social functioning Changed during trajectory Current discussion of outcomes: reactive and implicit #EHMA2020 #EHMA2020 @MMGarvelink
Discussion Why is the presentation of outcome information indispensable in making treatment decisions for Multiple Myeloma? (title) Current decision-making processes implicit and no structured OI Outcomes that our most important for patients Fits with participants information needs and goals May brigde knowlegde gap/confidence Enables active participation, opens up for dicussion of values (confidence, discussed info) All needed for SDM @MMGarvelink #EHMA2020 #EHMA2020
Take home message Real world outcome information as monitored in VBHC improvement cycles should be discussed with MM patients who are facing treatment decisions. Future research should look into how OI can best be communicated Ref: Santeon Experiment Outcome Information @MMGarvelink #EHMA2020 #EHMA2020
Thank you Acknowlegdements Participating patients and caregivers at St. Antonius Hospital, Nieuwegein Co-authors: Kirsten Daniels, Okke de Weerdt, Paul van der Nat Celgene inc. (now BMS) @MMGarvelink #EHMA2020 #EHMA2020
