JMIR Cancer,
Год журнала:
2022,
Номер
8(3), С. e39068 - e39068
Опубликована: Июль 14, 2022
The
patient
experience
of
multiple
myeloma
(MM)
is
multifaceted
and
varies
substantially
between
individuals.
Current
published
information
on
the
perspective
treatment
MM
limited,
making
it
difficult
to
gain
insights
into
needs
regarding
condition.In
this
review,
a
combined
research
method
approach
(ie,
review
literature
social
media
posts)
was
undertaken
provide
insight
patients'
perspectives
burden
MM,
impact
COVID-19
pandemic,
caregivers
patients
with
MM.Targeted
searches
PubMed
PsycINFO
were
conducted
from
November
16,
2010,
2020;
in
parallel,
patient-reported
derived
posts
6
advocacy
websites
YouTube
searched.
targeted
self-reported
diagnosis
who
discussed
their
its
treatments.A
total
27
articles
138
included
(patient-reported
data
76
individuals),
results
both
sources
showed
that
experienced
variety
symptoms
side
effects,
including
neuropathy,
fatigue,
nausea,
back
pain.
These
can
affect
areas
health-related
quality
life
(HRQOL),
physical
functioning;
emotional,
psychological,
well-being;
ability
work;
relationships.
Patients
valued
involvement
decision-making,
indicated
efficacy
tolerability
strongly
influence
decision-making.
For
patients,
caregivers,
physicians,
preference
for
treatments
strongest
when
associated
increased
survival.
Caregivers
struggle
balance
care
responsibilities
jobs,
HRQOL
affected
several
areas,
emotional-,
role-,
social-,
work-related
aspects
life.
pandemic
has
challenged
manage
because
limited
hospital
access
restrictions
negatively
lives,
psychological
well-being,
HRQOL.
Unmet
identified
more
productive
appointments
health
professionals,
better-tolerated
therapies,
support
themselves
caregivers.The
combination
provides
valuable
rich
details
experiences
perceptions
treatment.
highlighted
impeded
not
only
by
disease
but
also
treatment-related
effects.
strong
prolong
life,
appeared
value
participation
decisions.
However,
there
remain
unmet
further
research,
treatment,
caregiver
burden,
how
conduct
professionals.
This
may
help
improve
understanding
journey
MM.Multiple
Myeloma
second
most
common
cancer
affects
blood
cells.
In
study,
researchers
wanted
know
views
effects
they
received.
Researchers
looked
at
caregivers.
To
end,
reviewed
studies
MM.
commonly
reported
nerve
pain,
tiredness,
feeling
sick,
pain
caused
function;
found
be
involved
decisions
related
effectiveness
against
known
negative
influenced
choice
patients.
Increased
survival
factor
doctors.
caregivers'
lives
caring
impacted
well-being.
Finally,
some
requiring
improvement,
unproductive
need
fewer
useful
understand
Blood Cancer Journal,
Год журнала:
2021,
Номер
11(2)
Опубликована: Фев. 18, 2021
Abstract
Treatment
options
in
multiple
myeloma
(MM)
are
increasing
with
the
introduction
of
complex
multi-novel-agent-based
regimens
investigated
randomized
clinical
trials.
However,
application
real-world
setting,
including
feasibility
and
adherence
to
these
regimens,
may
be
limited
due
varying
patient-,
treatment-,
disease-related
factors.
Furthermore,
approximately
40%
MM
patients
do
not
meet
criteria
for
phase
3
studies
on
which
approvals
based,
resulting
a
lack
representative
data
patients.
Therefore,
treatment
decisions
must
tailored
based
additional
considerations
beyond
trial
efficacy
safety,
such
as
(including
frequency
clinic/hospital
attendance),
tolerability,
effects
quality
life
(QoL),
impact
comorbidities.
There
factors
importance
patients,
disease
symptoms,
burden
toxicities,
ability
participate
daily
activities,
financial
burden,
access
centers,
convenience
treatment.
All
drivers
QoL
satisfaction/compliance.
Importantly,
given
heterogeneity
MM,
individual
have
different
perspectives
regarding
most
relevant
goals
their
Patient
perspectives/goals
also
change
they
move
through
course.
Thus,
‘efficacy’
means
things
decision-making
context
personalized
medicine
guided
by
an
individual’s
composite
definition
what
constitutes
best
choice.
This
review
summarizes
various
practical
issues
that
considered
when
determining
choices.
It
assesses
current
instruments,
methodologies,
recent
initiatives
analyzing
patient
experience.
Finally,
it
suggests
enhancing
collection
treatments
provide
more
holistic
effectiveness
regimen
setting.
Journal for ImmunoTherapy of Cancer,
Год журнала:
2020,
Номер
8(2), С. e000734 - e000734
Опубликована: Июль 1, 2020
Outcomes
in
multiple
myeloma
(MM)
have
improved
dramatically
the
last
two
decades
with
advent
of
novel
therapies
including
immunomodulatory
agents
(IMiDs),
proteasome
inhibitors
and
monoclonal
antibodies.
In
recent
years,
immunotherapy
for
treatment
MM
has
advanced
rapidly,
approval
new
targeted
antibodies
directed
against
cell-surface
antigens,
as
well
maturing
data
from
late
stage
trials
chimeric
antigen
receptor
(CAR)
T
cells.
Therapies
that
engage
immune
system
to
treat
offer
significant
clinical
benefits
durable
responses
manageable
toxicity
profiles,
however,
appropriate
use
these
can
present
unique
challenges
practicing
physicians.
Therefore,
Society
Immunotherapy
Cancer
convened
an
expert
panel,
which
met
consider
current
role
approved
emerging
provide
guidance
oncology
community
by
developing
consensus
recommendations.
As
evolves
a
therapeutic
option
MM,
guidelines
will
be
updated.
Current Oncology,
Год журнала:
2022,
Номер
29(6), С. 3807 - 3824
Опубликована: Май 24, 2022
Advances
in
scientific
understanding
have
led
to
novel
therapies
and
improved
supportive
care
for
many
patients
with
haematological
malignancies.
However,
these
new
drugs
are
often
costly,
only
available
at
centralised
health
facilities,
require
regular
specialist
reviews
lengthy
treatment
regimens.
This
leads
a
significant
financial
burden.
Understanding
the
impact
of
burden
on
is
important
appreciate
urgency
alleviating
this
systemic
issue.Eligible
studies
were
identified
by
systematically
searching
Medline,
PsycINFO,
CINAHL
Embase.
Self-reported
data
reported
both
quantitative
qualitative
that
described
malignancies
included.
Quality
appraisal
included
was
undertaken
using
Joanna
Briggs
Institute
tools.
A
narrative
synthesis
employed.
For
studies,
outcomes
extracted,
tabulated
categorised
find
similarities
differences
between
studies.
quotations,
codes
themes
extracted
then
clustered.
An
inductive
approach
derived
themes.Twenty
inclusion.
Of
most
(83%)
employed
un-validated
researcher-generated
measures
assess
Between
15-59%
experienced
Out-of-pocket
expenditure
frequent
clinical
appointments,
prescription
non-prescription
medication,
travel.
Financial
associated
worsening
quality
life
living
metropolitan
areas,
but
there
no
evidence
survival.
Patient-centred
experiences
from
inquiry
complemented
findings
five
determined:
familial
or
household
impact;
reliance
others;
barriers
due
cost;
accessing
assistance
sources
out-of-pocket
expenses.The
impacts
yet
be
fully
appreciated
malignancies,
exacerbated
heterogeneous
methods
researchers.
Future
work
should
focus
identifying
long-term
ramifications
trial
interventions
reduce
its
prevalence
patient
impacts.
Blood Cancer Journal,
Год журнала:
2021,
Номер
11(10)
Опубликована: Окт. 26, 2021
As
the
prognosis
for
multiple
myeloma
(MM)
has
significantly
improved
and
patients
remain
on
therapy
longer,
there
is
a
need
supportive
care
interventions
to
optimize
patient
quality
of
life
(QOL)
functional
status
over
course
cancer
treatment.
MM
characterized
by
significant
symptom
burden
relatively
lower
QOL
compared
other
cancers.
This
review
evaluates
role
healthy
lifestyle
behaviors
in
improving
both
physical
functioning
psychological
well-being
population.
We
(1)
describe
current
literature
activity,
weight
management,
diet,
sleep,
substance
use
context
MM,
(2)
present
important
considerations
incorporating
factors
into
clinical
practice,
(3)
identify
directions
future
research.
Developing
MM-specific
guidelines
modifiable
changes
that
take
account
length
treatment
unique
disease
features
(i.e.
osteolytic
lesions
anemia)
may
provide
promising
path
functioning.
Translational Behavioral Medicine,
Год журнала:
2023,
Номер
13(4), С. 255 - 267
Опубликована: Янв. 23, 2023
Abstract
Shared
decision-making
(SDM)
is
a
key
component
of
patient-centered
healthcare.
SDM
particularly
pertinent
in
the
relapsed
and/or
refractory
multiple
myeloma
(RRMM)
setting,
which
numerous
treatment
options
can
present
challenges
for
identifying
optimal
care.
However,
few
studies
have
assessed
extent
and
relevance
communication
(PCC)
RRMM.
To
describe
patterns
between
physicians
patients
RRMM
we
conducted
online
surveys
USA
to
compare
their
perspectives
on
process
decision-making.
We
analyzed
descriptively.
Two
hundred
hematologists/oncologists
200
with
receiving
second-line
(n
=
89),
third-line
65),
fourth-line
46)
therapy
participated.
Top
goals
included
extending
overall
survival
(among
76%
83%
patients,
respectively)
progression-free
54%
77%
respectively),
regardless
number
prior
relapses.
Thirty
percent
believed
preferred
shared
approach
decision-making,
while
40%
reported
most
often
preferring
role
One-fourth
make
final
decision
after
seriously
considering
opinion.
Thirty-two
16%
recalled
≥3
presented
at
first
relapse.
Efficacy
was
primary
goal
physicians.
Discrepancies
perceptions
during
exist,
indicating
that
tools
are
needed
facilitate
PCC.
Qualitative Health Research,
Год журнала:
2018,
Номер
29(5), С. 758 - 773
Опубликована: Окт. 8, 2018
Within
mainstream
cancer
literature,
policy
documents,
and
clinical
practice,
“work”
is
typically
characterized
as
being
synonymous
with
paid
employment,
the
problem
of
work
situated
within
“return
to
work”
discourse.
The
that
patients
perform
in
managing
their
health,
care,
everyday
life
at
times
illness,
however,
largely
overlooked
unsupported.
Drawing
on
feminist
political
economy
theory,
we
report
a
qualitative
study
12
women
living
cancer.
Major
findings
show
patienthood
cut
across
multiple
fields
practice
included
both
unpaid
labor.
most
prevalent
types
illness
work,
body
identity
employment
and/or
maintaining
income,
coordination
work.
this
disrupt
popular
conceptualizations
illuminate
nuanced
often
invisible
may
encounter,
health
consequences
inequities
therein.
