Myeloma 74 Mirjam Garvelink PhD mgarvelinkantoniusziekenhuisnl MMGarvelink EHMA2020 Mr K has MM MMGarvelink EHMA2020 Shared Decision Making SDM SDM MMGarvelink
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Slide1
#EHMA2020
Why the presentation of outcome information is indispensable in making treatment decisions for Multiple
Myeloma (#74)
Mirjam Garvelink
PhD
m.garvelink@antoniusziekenhuis.nl
@
MMGarvelink
Slide2#EHMA2020
Mr. K has MM
@
MMGarvelink
Slide3#EHMA2020
Shared
Decision
Making (SDM)
SDM
@
MMGarvelink
Slide4Value
based
healthcare
(VBHC)
Expert
team
Collect &
compare
data
Implement
improvements
1
2
3
Analyse
differences
VBHC
improvement
cycle
Outcome
information
Quality
improvement
Slide5VBHC
& SDM
Outcome
information
Expert
team
Collect &
compare
data
Implement
improvements
1
2
3
Analyse
differences
VBHC
improvement
cycle
Clinical
encounter
Quality
improvement
SDM
Slide6#EHMA2020
Aim
To explore
communication
, information
exchange and
decision-making, and
how
this can be improved with (real world) outcome information.
@
MMGarvelink
Slide7#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
C
ommunication & use of outcome information
Data analysis
D
ouble coded (open)
Thematically categorised
M
emberchecks
@
MMGarvelink
Slide8#EHMA2020
Results
(1):
D
ecision-making
Few option awareness
Few involvement in DM (implicit)
Participants want to be involved but lack knowledge/confidence
T
rust in hematologist
@
MMGarvelink
Slide9#EHMA2020
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
”
@
MMGarvelink
Slide10#EHMA2020
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 goalsMay brigde
knowlegde gap/confidence
Enables active participation
, opens up for
dicussion of values (
confidence, discussed info)
All
needed
for SDM
@
MMGarvelink
Slide11#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
@
MMGarvelink
Ref: Santeon Experiment
Outcome
Information
Slide12#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