giving voice to older adults who have life-limiting ... · system priorities when integrating proms...
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Richard Sawatzky, RN, PhDProfessor & Canada Research Chair Person-Centred OutcomesSchool of Nursing, Trinity Western University, Langley BC Canada
Centre for Health Evaluation and Outcomes Sciences, Providence Health Care, Vancouver BC Canada
SUPPORT UNIT - BC Academic Health Sciences Network
Salgrenska Academy, University of Gothenburg, Sweden
Giving Voice to Older Adults Who Have Life-Limiting Conditions and their Family Caregivers
The Quality of Life and Practice Support System (QPSS) Initiative
Outline and objectives
• To understand the use of QOL assessment tools for enhancing person-centred care of older adults and their family caregivers
Introduction to Quality of Life (QOL) Assessment
• To describe desired features of a QPSS from the perspectives of older adults patients, family caregivers, and healthcare providers
Quality of Life Assessment and Practice Support System
• To recognize how diverse perspectives shape nurses’ use of QOL assessment tools in clinical practice
Use of QOL Assessment Tools in Clinical Practice
Discussion
Quality of Life Assessment ToolsBuilding blocks for person-centred care
“The imperative of person-centered care means that patients’ and families’ quality of life, as well as their experiences with health care, should be routinely, and comprehensively, acknowledged and assessed.”
Öhlén et al. (2017)
“Our aim should be to find out what each patient wants, needs, and experiences in our health care system”
M. Gerteis et al. (1993)
Patient Reported Outcome Measures (PROMs)How are you doing?
Measurement of patients’ and families’ perspectives of their health outcomes and
quality of life
Patient Reported Experience Measures (PREMs)
How is the care you are receiving? Measurement of patients’ and families’
experiences with the care provided
Person-centredcare
What matters to you?Care that focuses on the needs and
priorities that matter to patients and family caregivers
QOL Assessment Tool for Palliative CareThe McGill Quality of Life Questionnaire Expanded (MQOL-E)
Quality of life
Physical
Psychological
Existential
Relationships
Physical symptoms
Physically unable to do thingsFeeling physically well
Depressed
How often sadNervous or worried
Communication
Feel supportedRelationships stressful
Fear of the futureMeaning in life
ControlAchievement of life goals
Self-esteem
Environment
Cognition
Health care
Burden
Physical surroundings meet needs
Able to think clearlyMemory
Feeling like a burden
Information from health care team
Quality of health care
Cohe
n, S
. R.,
Russ
ell,
L. B
., Le
is, A
., Sh
ahid
i, J.,
Por
terf
ield
, P.,
Kuhl
, D. R
., . .
. Sa
wat
zky,
R.
(201
9). M
ore
com
preh
ensiv
ely
mea
surin
g qu
ality
of l
ife in
life
-thr
eate
ning
illn
ess:
the
McG
ill Q
ualit
y of
Life
Que
stio
nnai
re –
Expa
nded
. BM
C Pa
lliat
ive
Care
, 18(
1), 9
2. d
oi:
10.1
186/
s129
04-0
19-0
473-
y
QOL Assessment Tool for Family Caregivers
Quality of life
Carer outlook
Carer qualityof life
Environment
Financial worriesPatient
conditionQuality of
care
Relationships
Quality of Life in Life-Threatening Illness – Family Carer (Version 2)
Cohen, R., Leis, A. M., Kuhl, D., Charbonneau, C., Ritvo, P., & Ashbury, F. D. (2006). QOLLTI-F: Measuring family carer quality of life. Palliative Medicine, 20(8), 755-767.
PREM for People With Life Limiting ConditionsCanadian Health Care Evaluation Project (CANHELP)
EXAMPLE QUESTIONS
You were treated by doctors,
nurses, and other members of
the health care team in a
manner that preserved your
sense of dignity.
Your emotional problems (for
example: depression, anxiety)
were adequately assessed and
controlled.
Each question is rated on (1) Importance, (2) Satisfaction
Domain # questions
Relationships with care providers 3
Illness management 9
Communication 3
Decision making 4
Feeling at peace 1
Heyland DK, Jiang X, Day AG et al. (2013) The development and validation of a shorter version of the Canadian Health Care Evaluation Project Questionnaire (CANHELP Lite): A novel tool to measure patient and family satisfaction with end-of-life care. J Pain Symptom Manage 46:289-297
EXAM
PLE
REFE
REN
CES
ON
QO
L AS
SESS
MEN
TS IN
PAL
LIAT
IVE
CARE
:
Antu
nes,
B.,
Hard
ing,
R.,
& H
iggi
nson
, I. J
. (20
14).
Impl
emen
ting
patie
nt-r
epor
ted
outc
ome
mea
sure
s in
palli
ativ
e ca
re c
linic
al p
ract
ice:
A sy
stem
atic
revi
ew o
f fac
ilita
tors
and
bar
riers
. Pal
liatM
ed, 2
8(2)
, 158
-17
5.
Cata
nia,
G.,
Becc
aro,
M.,
Cost
antin
i, M
., U
golin
i, D.
, De
Silv
estr
i, A.
, Bag
nasc
o, A
., &
Sas
so, L
. (20
15).
Effe
ctiv
enes
s of c
ompl
ex in
terv
entio
ns fo
cuse
d on
qua
lity-
of-li
fe a
sses
smen
t to
impr
ove
palli
ativ
e ca
re
patie
nts'
outc
omes
: a sy
stem
atic
revi
ew. P
allia
tMed
, 29(
1), 5
-21.
QOL Assessment Innovation Community
Quality of life + practice support system
Quality of life + practice support system
patient data (biometrics, assessments), messages, appointment booking
educational materials, treatment plans, messages, appointment confirmations
Primary Care Provider
Patient& Family
Other Care Providers
sensorsdata entry
information
data entry records
sensors
information
Cambian Navigator
• Assessment tools for a wide range of general and disease-specific conditions
• Educational content personalized for users
• Self-serve appointment booking
• Provider communication
https://cambiannavigator.com/
Cambian Coordinator
• Communications to reach out to patients inviting them to participate
• Explicit consent and proper data handling to protect privacy and enable secondary use
• Integrated instrument-specific scoring, comparative analysis, and trending
• Export de-identified data sets for use in other analysis tools
https://cambianservices.com/carecoordinator/
Research on QPSS use in clinical practice
STUDIES1. Design and
introduction of a QPSS 2. Integrating a QPSS in a
clinical practice3. Examining relational
use of a QPSS4. Randomized controlled
trial to examine effectiveness of a QPSS
5. Knowledge translation
Study 1: Design and introduction of a QPSS
QPSS integration
Health care organization
• Organizational priorities
Use at point of care
• Workflow integration• Competence of
clinicians• Relational use with
patients and family caregivers
Technology context
• Digital integration• Facilitate relational use • Address priorities of
different knowledge users
Saw
atzk
y, R
., La
fore
st, E
., Sc
hick
Mak
arof
f, K.
, Sta
jduh
ar, K
., Re
imer
-Kirk
ham
, S.,
*Kra
wcz
yk, M
., Co
hen,
R. (
2018
). De
sign
and
intr
oduc
tion
of a
qua
lity
of li
fe a
sses
smen
t an
d pr
actic
e su
ppor
t sys
tem
: Per
spec
tives
from
pal
liativ
e ca
re se
ttin
gs. J
ourn
al o
f Pa
tient
-Rep
orte
d O
utco
mes
. 2, 3
6. d
oi: 1
0.11
86/s
4168
7-01
8-00
65-2
How do hospital palliative care clinicians relate to different health care system priorities when integrating PROMS and PREMs into their practice?
Study 2: Integrating a QPSS in a palliative care unitKr
awcz
yk, M
., Sa
wat
zky,
R.,
Schi
ck-M
akar
off,
K., S
tajd
uhar
, K.,
Öhl
en, J
., Re
imer
-Kirk
ham
, S.,
Lafo
rest
, E.,
& C
ohen
, S. R
. (20
18).
Mic
ro-m
eso-
mac
ro p
ract
ice
tens
ions
in u
sing
patie
nt-r
epor
ted
outc
ome
and
expe
rienc
e m
easu
res i
n ho
spita
l pal
liativ
e ca
re.
Qua
litat
ive
Heal
th R
esea
rch.
doi
: 10.
1177
/104
9732
3187
6136
6
Different Purposes for QOL AssessmentsMacro-Meso-Micro Framework
Individual-level focus on shared decision-making and enhanced continuity of care through integration in practice
MACRO•Accountability and
health policy at regional, provincial and national levels
MESO•Quality
improvement at organizational levels
MICRO•Enhanced person-
centered care at the individual level
Society-level focus on population health and decisions about cost, equity and health policy
Organization-level focus on identifying gaps in services,
decisions about different types of treatments, and
cost effectiveness
Negotiating health care priorities by diverse stakeholders
Benefits of mandated use Benefits of discretionary use
Growing recognition of tensions
Standardization and quantification
Strengthens ability to provide PCC Constrains ability to provide PCC
Scope of practice
QOL everyone's concern QOL domain of social work/spiritual care
Results: Practice tensions
Knowledge-to-action research project with palliative nurse consultants trialing the QPSS with older hospitalized adults receiving acute care.
Primary aim of the study to understand consultants’ and patients’ experiences and perspectives of use regarding the desirable features of the QPSS and its use in clinical practice.
Large tertiary acute care hospital in Western Canada.
Study 3: Relational use of a QPSS in hospital palliative consult care
• Increased visibility of quality of life concerns within hospital
• Incorporated aspects of the standardized QOL assessment questions into routine verbal interactions with non-participating patients
• Increased capacity to provide person-centered care
Kraw
czyk
, M. &
Saw
atzk
y, R.
(201
8). R
elat
iona
l use
of a
n el
ectr
onic
qua
lity
of li
fe a
nd p
ract
ice
supp
ort s
yste
m in
hos
pita
l pa
lliat
ive
cons
ult c
are.
Pal
liativ
e an
d Su
ppor
tive
Care
. doi
: 10
.101
7/S1
4789
5151
8000
020
Results: Impact on practice
Supporting quality of life assessments of frail older adults and their family caregiversKnowledge translationPrincipal Investigators:•Richard Sawatzky — Trinity Western University•Kara Schick-Makaroff — University of Alberta
