Open access Original research What does integrated care ...
Transcript of Open access Original research What does integrated care ...
1Lawless MT, et al. BMJ Open 2020;10:e035157. doi:10.1136/bmjopen-2019-035157
Open access
What does integrated care mean from an older person’s perspective? A scoping review
Michael T. Lawless ,1 Amy Marshall,2 Manasi Murthy Mittinty ,3 Gillian Harvey2
To cite: Lawless MT, Marshall A, Mittinty MM, et al. What does integrated care mean from an older person’s perspective? A scoping review. BMJ Open 2020;10:e035157. doi:10.1136/bmjopen-2019-035157
► Prepublication history for this paper is available online. To view these files, please visit the journal online (http:// dx. doi. org/ 10. 1136/ bmjopen- 2019- 035157).
Received 21 October 2019Revised 16 December 2019Accepted 17 December 2019
1College of Nursing and Health Sciences, Flinders University, Bedford Park, South Australia, Australia2Adelaide Nursing School, The University of Adelaide, Adelaide, South Australia, Australia3Pain Management Research Institute, University of Sydney, Sydney, New South Wales, Australia
Correspondence toDr Michael T. Lawless; michael. lawless@ flinders. edu. au
Original research
© Author(s) (or their employer(s)) 2020. Re- use permitted under CC BY- NC. No commercial re- use. See rights and permissions. Published by BMJ.
Strengths and limitations of this study
► This is the first scoping review to identify, synthesise and appraise the quality of the available literature on older patients’ experiences and perceptions of integrated care based on their journeys through the health system.
► Our review is comprehensive in nature, incorporat-ing published peer- reviewed studies and grey litera-ture on patient experiences of care integration.
► We used a narrative descriptive technique to syn-thesise the findings of the studies and extracted en-ablers and barriers to integrated care from an older person’s perspective at the clinical, service and healthcare system levels.
► This review forms part of a larger body of research that aims to coproduce and evaluate locally relevant approaches designed to improve integrated care for older adults in South Australia.
► As this review incorporates studies drawing on dif-ferent terms and definitions and reporting on differ-ent health conditions across a variety of healthcare settings, it may lack specificity.
AbStrACtObjective To systematically map and synthesise the literature on older adults’ perceptions and experiences of integrated care.Setting Various healthcare settings, including primary care, hospitals, allied health practices and emergency departments.Participants Adults aged ≥60 years.Interventions Integrated (or similarly coordinated) healthcare.Primary and secondary outcome measures Using scoping review methodology, four electronic databases (EMBASE, CINAHL, PubMed and ProQuest Dissertation and Theses) and the grey literature (Open Grey and Google Scholar) were searched to identify studies reporting on older adults’ experiences of integrated care. Studies reporting on empirical, interpretive and critical research using any type of methodology were included. Four independent reviewers performed study selection, data extraction and analysis.results The initial search retrieved 436 articles, of which 30 were included in this review. Patients expressed a desire for continuity, both in terms of care relationships and management, seamless transitions between care services and/or settings, and coordinated care that delivers quick access, effective treatment, self- care support, respect for patient preferences, and involves carers and families.Conclusions Participants across the studies desired accessible, efficient and coordinated care that caters to their needs and preferences, while keeping in mind their rights and safety. This review highlights the salience of the relational, informational and organisational aspects of care from an older person’s perspective. Findings are transferable and could be applied in various healthcare settings to derive patient- centred success measures that reflect the aspects of integrated care that are deemed important to older adults and their supporters.
IntrOduCtIOnEvidence suggests that many older people are ‘falling through the gaps’ and experiencing fragmented care,1 particularly when they live with multimorbidity and frailty. In Australia, over 83% of the population aged over 75 years live with two or more chronic condi-tions2 and, in the USA, around half of the
population aged over 75 years is reported to live with three or more chronic conditions.3 This group commonly deals with health and functional challenges and reports almost twice as many problems resulting from poorly integrated care compared with those without multimorbidity.4 This is because they typically see several healthcare providers for different medical conditions, take multiple medi-cations, have numerous agencies involved in providing care and experience a higher incidence of hospitalisation.5 These circum-stances can compromise patient care, further contributing to poorer health outcomes, reduced quality of life and increased health-care utilisation and costs.
Care integration is proposed as a solu-tion to such fragmentation,6 with the poten-tial to improve patient experiences while minimising unnecessary use of healthcare resources. Definitions and terminology used
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to describe integrated care differ within the published literature. The WHO defines integrated care, or inte-grated health services delivery, as:
An approach to strengthen people- centred health systems through the promotion of the comprehen-sive delivery of quality services across the life- course, designed according to the multidimensional needs of the population and the individual and delivered by a coordinated multidisciplinary team of providers working across settings and levels of care.7 (p 10)
Attempts to improve care integration have been made through numerous policy and research endeav-ours, yet the extent to which such efforts have achieved wide- scale impact remains questionable. A key message from research to date is that there is no ‘one- size- fits- all’ approach to integrated care.8 Rather, successful design and implementation of integrated care models requires attending to contextual factors, including local enablers and barriers.6 Evidence to date indicates that the most successful implementation efforts are: (1) bottom- up rather than top- down; (2) driven by local need; and (3) have the support and engagement of all key stakeholders, particularly patients and their carers/families.3 This suggests the need to engage older adults, their families and carers, and care providers to achieve the most effec-tive care coordination and integration.
To date, relatively few studies have focused on patients’ perspectives on integrated care, although some research suggests that there may be distinct differences between provider and patient narratives.9 Patients are more likely to emphasise the importance of relational aspects of care and the everyday consequences of living with their condi-tion, as opposed to a clinical focus on managing specific health conditions. This reinforces the importance of understanding patients’ perspectives and views of inte-grated care, rather than focusing primarily on policy and service- level priorities—a point highlighted in previous research10 and the focus of this scoping review.
To our knowledge, no evidence synthesis has summarised the available literature on older adults’ views and expectations regarding integrated or similarly coor-dinated care. Starting with a focus on patient experiences rather than single- organisation or single- sector solutions,8 this review forms part of a larger programme of research that aims to coproduce and implement locally relevant approaches to improve integrated care for older adults at risk of repeated hospitalisation guided by a person- centred approach.11 12
review questionsThe review protocol has been published previously12 and sets out a plan to address the following questions:1. How do older patients define their views and experi-
ences of integrated care?2. What are the barriers and enablers of quality integrat-
ed care from an older person’s perspective?
3. What is the quality of the literature on older patients’ perspectives on integrated care?
4. What are the potential implications for the design and implementation of integrated care programmes for older people?
MAterIAlS And MethOdSScoping reviews are used to understand the existing breadth of research on a topic, identify gaps in existing literature and assess the need for further investigation.13 14 The scoping review methodology outlined by Arksey and O’Malley13 was employed, details of which are published in our protocol.12 The Preferred Reporting Items for Systematic Reviews and Meta- Analyses extension for scoping reviews checklist15 was used to guide reporting.
Identifying relevant studiesThe search strategy aimed to locate published peer- reviewed studies and grey literature reporting on the views of older adults aged ≥60 years (male or female) who had received integrated or similarly coordinated care of any definition in any type of healthcare setting. MMM performed the initial search in four electronic databases (EMBASE, CINAHL, PubMed and ProQuest) and two grey literature databases (Open Grey and Google Scholar). Studies published from June 2008 to July 2019 in English language were included to ensure feasibility and relevance to the current healthcare context, that is, studies conducted after the publication of a consensus definition of integrated care by the WHO.12 No limitations were placed on study design, type of healthcare setting, geographical location, or the upper age and gender of the participants. Literature search strategies were devel-oped using keywords pertinent to older patients and their perspectives. Appropriate variations in spelling and plurals were used in the search (table 1).
Study selectionStudies were selected via a three- step process. First, AM, GH and MMM independently screened titles and abstracts to determine inclusion status. A second screen of full- text articles (AM, ML) ensured that the studies met the inclusion criteria. Third, AM and ML assessed the remaining full- text records for eligibility. A third author (GH) assessed the articles when the other reviewers were uncertain about eligibility status. Disagreements between the reviewers were resolved through group discussion. Finally, we conducted bibliographic searching of the reference lists of the included articles to identify addi-tional potentially relevant studies.
data extractionAM, ML and GH used a standardised form to extract relevant data and consulted regularly to help main-tain uniformity during the extraction procedure. The following data were extracted: bibliographic informa-tion, aim(s) of study, additional research questions/objectives, study design characteristics, participant
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Table 1 Search terms used for PubMed database
Word group 1: older patients Word group 2: patient perspectives Word group 3: integrated care
‘Aged’[mh]ORolder patient*[tw]ORelderly patient*[tw]
views*[tw]ORperspective*[tw]ORexpectation*[tw]ORexperience*[tw]
‘Delivery of health care, integrated’[mh]ORintegrated care[tw]ORfragmented care[tw]ORcontinued care[tw]ORpreventative care service*[tw]ORpreventive services*[tw]ORcurative service*[tw]
characteristics, definition of integrated care provided, outcomes reported, most important findings containing patient voice, other relevant findings, conclusions, study limitations and author recommendations.
Quality appraisalAlthough it is not customary to undertake a quality appraisal as part of a scoping review,13 because the purpose of this review was to inform recommendations for healthcare policy and practice, a formal quality assess-ment was deemed appropriate. The Joanna Briggs Insti-tute critical appraisal checklists16 17 were used to assess the quality of final studies included in the review. We used these checklists due to their brevity, clarity and explicit focus on appraising the voices of participants and their role in generating and/or interpreting the research findings. These tools are designed to assess the meth-odological quality of studies and determine the extent to which studies have addressed the possibility of bias in study design, conduct or analysis. ML, AM and GH independently assessed the papers; scores were catego-rised into ‘low’ (1–3/10 for qualitative research; 1–2/8 for quantitative research), ‘average’ (4–7/10; 3–5/8) and ‘high’ (8–10/10; 6–8/8) ranges for each assessment tool. These ranges were used to define an overall quality rating for each article. In line with scoping review methodology and in contrast to systematic review methodology, articles were not excluded on the basis of methodological quality assessment or intervention effectiveness.
reporting the resultsA narrative descriptive technique was used to synthesise the findings of the studies.18 19 Using this approach, we familiarised ourselves with the completed data extraction forms and inductively generated codes as they related to the review questions and aims. Studies and their findings were then grouped into logical categories and common themes were identified. Potential enablers and barriers were extracted from the synthesis and categorised into the corresponding thematic categories using a combined inductive and deductive approach. The final themes were decided on through deliberation and reference to
supportive data. Analytical rigour was upheld through regular team meetings in which codes, categories and major themes were discussed and crosschecked with an audit trail maintained in a Microsoft Excel workbook.
Patient and public involvementA local advisory group working with older adults was engaged periodically during the review process.12 To ensure a patient- centred approach and to facilitate the application of the review findings, results will be dissemi-nated among patients, carers and other stakeholders and presented at public forums. Findings from this review will feed into ongoing research with the objective of copro-ducing and evaluating local initiatives designed to improve integrated care for older adults in South Australia.
reSultSSearch resultsFour hundred and thirty- six articles were retrieved from the initial search and, following the removal of dupli-cates (n=100), 336 articles were screened for eligibility. Fifty- six articles were selected for full- text review and, of these, 26 articles were included in the review. Reference list searching identified an additional four articles, which are included in the final review (figure 1).
description of studiesFifteen studies (50%) used a qualitative methodology,20–34 while the remainder used a quantitative methodology (20%, n=635–40), or a mixed methodology (20%, n=641–46). Three records (10%) were reports produced by two non- government organisations in the UK.47–49 Most of the studies were conducted in Europe (53%, n=16) or North America (40%, n=12). Sample sizes of patient groups or subgroups (ie, older adults) ranged from 4 to 15 617 participants. The average age of participants in the older adult/patient groups ranged from 59 to 87 years. Although we focused on the experiences of older people, studies reporting on younger participants (ie, aged <60 years) were included if the average age of participants was ≥60 years due to the limited number of eligible studies
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nloaded from
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Open access
Figure 1 Preferred Reporting Items for Systematic Reviews and Meta- Analyse (PRISMA) flow diagram.
reporting exclusively on older people. Participants had one or more of the following conditions: chronic obstruc-tive pulmonary disease, cancer, coronary heart disease, diabetes, stroke, arthritis and asthma (table 2).
Six articles (20%) provided a definition of integrated care.20 26 28 30 44 46 Although definitions varied, they cited common elements and/or principles including: comprehensive services, coordinated care, patient focus, multidisciplinary and/or interprofessional teamwork, effective information systems, optimised resource use, and appropriate organisational culture and leadership. None of the studies explicitly referenced the WHO definition of integrated care.7 Reflecting the diffuse research literature on integrated care across academic
journals and disciplines and the inconsistent termi-nology used to describe integrated care programmes, initiatives, settings and/or evaluations,50 several other concepts and terms were mentioned or defined in the articles in relation to care integration: ‘care coordina-tion’,22 27 39 40 ‘continuity of care’,25 32 38 47 ‘shared care’,31 ‘collaborative self- management’,43 ‘person-/patient- centred care’.24 29 36 37 39 41
Quality of the included articlesThe methodological quality of the included studies was rated as ‘average’ (15 studies) to ‘high’ (12 studies); quality appraisal was not performed on the three reports. Common limitations of the qualitative papers were: lack
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Tab
le 2
S
umm
ary
of in
clud
ed s
tud
ies
Aut
hor(
s) a
nd
pub
licat
ion
year
Tit
leC
oun
try
of
stud
yP
urp
ose
Stu
dy
des
ign
char
acte
rist
ics
Par
tici
pan
t ch
arac
teri
stic
s
Defi
niti
on
of
inte
gra
ted
car
e us
ed
in s
tud
y
Alg
ilani
et
al
(201
7)41
An
inte
ract
ive
ICT
pla
tfor
m
for
early
ass
essm
ent
and
m
anag
emen
t of
pat
ient
- rep
orte
d
conc
erns
am
ong
old
er a
dul
ts
livin
g in
ord
inar
y ho
usin
g—d
evel
opm
ent
and
feas
ibili
ty
Sw
eden
To d
evel
op a
nd t
est
feas
ibili
ty a
nd
acce
pta
bili
ty o
f an
inte
ract
ive
ICT
pla
tfor
m
inte
grat
ed in
a t
able
t fo
r co
llect
ing
and
m
anag
ing
pat
ient
- rep
orte
d c
once
rns
of
old
er a
dul
ts in
hom
e ca
re
Mix
ed- m
etho
ds
des
ign
com
bin
ing
inte
rvie
ws
with
ol
der
ad
ults
and
hea
lthca
re
pro
fess
iona
ls, a
nd lo
gged
q
uant
itativ
e d
ata
n=8
Sw
edis
h- sp
eaki
ng o
lder
ad
ults
reg
iste
red
in a
nd
rece
ivin
g as
sist
ance
and
/or
regu
lar
cont
act
with
a n
urse
in
the
hea
lthca
re s
yste
m
Non
e p
rovi
ded
Bai
llie
et a
l (2
014)
20C
are
tran
sitio
ns fo
r fr
ail,
old
er
peo
ple
from
acu
te h
osp
ital w
ard
s w
ithin
an
inte
grat
ed h
ealth
care
sy
stem
in E
ngla
nd: a
qua
litat
ive
case
stu
dy
UK
To in
vest
igat
e ca
re t
rans
ition
s of
frai
l ol
der
peo
ple
from
acu
te h
osp
ital w
ard
s to
com
mun
ity h
ealth
care
or
com
mun
ity
hosp
ital w
ard
s, w
ithin
a s
yste
m t
hat
had
ve
rtic
ally
inte
grat
ed a
cute
hos
pita
l and
co
mm
unity
hea
lthca
re s
ervi
ces
Mul
timet
hod
qua
litat
ive
stud
y in
clud
ing
ind
ivid
ual
inte
rvie
ws
and
focu
s gr
oup
s
n=17
key
hos
pita
l war
d
staf
f (G
Ps,
ad
ult
com
mun
ity
heal
thca
re le
ad, d
istr
ict
nurs
es, c
omm
unity
p
hysi
othe
rap
ist,
com
mun
ity
occu
pat
iona
l the
rap
ist);
n=
36 w
ard
sta
ff; n
=4
old
er a
dul
ts (7
5% fe
mal
e;
age
rang
e 78
–98
year
s)
und
ergo
ing
care
tra
nsiti
ons
‘Inte
grat
ion
is t
he
com
bin
atio
n of
m
etho
ds,
pro
cess
es
and
mod
els
that
aim
to
ach
ieve
inte
grat
ed
care
, whi
ch is
an
orga
nisi
ng p
rinci
ple
for
care
del
iver
y th
at a
ims
to im
pro
ve p
atie
nt
care
thr
ough
bet
ter
coor
din
atio
n’
Bay
liss
et a
l (2
008)
21P
roce
sses
of c
are
des
ired
b
y el
der
ly p
atie
nts
with
m
ultim
orb
iditi
es
US
ATo
exp
lore
pro
cess
es o
f car
e d
esire
d b
y el
der
ly p
atie
nts
who
hav
e m
ultim
orb
iditi
es
that
may
pre
sent
com
pet
ing
dem
and
s fo
r p
atie
nts
and
pro
vid
ers
Qua
litat
ive
des
ign
usin
g in
div
idua
l int
ervi
ews
n=26
non
- for
- pro
fit H
ealth
M
aint
enan
ce O
rgan
izat
ion
mem
ber
s (5
0% fe
mal
e) a
ged
65
–84
year
s
Non
e p
rovi
ded
Ber
end
sen
et
al (2
009)
22Tr
ansi
tion
of c
are:
exp
erie
nces
an
d p
refe
renc
es o
f pat
ient
s ac
ross
the
prim
ary/
seco
ndar
y in
terf
ace—
qua
litat
ive
stud
y
Net
herla
nds
To e
xplo
re t
he t
rans
ition
of c
are
at t
he
prim
ary–
sec
ond
ary
inte
rfac
e w
ith r
efer
ence
to
the
imp
act
of p
atie
nts’
ab
ility
to
mak
e ch
oice
s ab
out
thei
r se
cond
ary
care
p
rovi
der
s
Exp
lora
tory
qua
litat
ive
des
ign
with
sem
istr
uctu
red
fo
cus
grou
ps
n=71
Dut
ch p
atie
nts
who
ha
d b
een
refe
rred
to
a sp
ecia
list
with
in t
he p
ast
2 ye
ars
Non
e p
rovi
ded
Blo
m e
t al
(2
016)
35E
ffect
iven
ess
and
cos
t-
effe
ctiv
enes
s of
a p
roac
tive,
go
al- o
rient
ed, i
nteg
rate
d c
are
mod
el in
gen
eral
pra
ctic
e fo
r ol
der
peo
ple
. A c
lust
er
rand
omis
ed c
ontr
olle
d t
rial:
inte
grat
ed s
yste
mat
ic c
are
for
old
er p
eop
le—
the
ISC
OP
E s
tud
y
Net
herla
nds
To a
sses
s th
e ef
fect
iven
ess
and
cos
t-
effe
ctiv
enes
s of
a s
imp
le s
truc
tura
l m
onito
ring
syst
em t
o d
etec
t th
e d
eter
iora
tion
in s
omat
ic, f
unct
iona
l, m
enta
l or
soc
ial h
ealth
of i
ndiv
idua
ls a
ged
75
and
ov
er fo
llow
ed b
y th
e ex
ecut
ion
of a
car
e p
lan
for
thos
e p
eop
le w
ith a
com
bin
atio
n of
som
atic
, fun
ctio
nal,
men
tal a
nd s
ocia
l p
rob
lem
s
Ob
serv
er- b
lind
ed c
lust
er
rand
omis
ed c
ontr
olle
d t
rial
n=72
85 o
lder
ad
ults
with
co
mp
lex
heal
th p
rob
lem
s at
tend
ing
gene
ral p
ract
ices
in
Lei
den
, Net
herla
nds
Non
e p
rovi
ded
Bur
ridge
et
al
(201
6)23
Mak
ing
sens
e of
cha
nge:
p
atie
nts'
vie
ws
of d
iab
etes
and
G
P- l
ed in
tegr
ated
dia
bet
es c
are
Aus
tral
iaTo
inve
stig
ate
pat
ient
s’ p
erce
ptio
ns a
nd
exp
erie
nces
of t
ype
2 d
iab
etes
, sel
f- ca
r e
and
eng
agem
ent
with
a G
P- l
ed in
tegr
ated
d
iab
etes
car
e m
odel
Qua
litat
ive
inte
rvie
ws,
th
emat
ic a
naly
sis
usin
g no
rmal
isat
ion
pro
cess
th
eory
n=30
old
er p
atie
nts
with
typ
e 2
dia
bet
esN
one
pro
vid
ed
Che
ng (2
017)
24E
mot
ions
, sig
nific
ance
and
im
pro
vem
ent
exp
ecta
tions
: the
p
erso
nal m
atte
r of
a p
atie
nt’s
ho
spita
l sta
y
Can
ada
To le
arn
abou
t p
atie
nts’
per
spec
tives
of
hosp
ital c
are
to g
ain
insi
ghts
ab
out
the
spec
ifics
of p
atie
nt- c
entr
ed c
are
Qua
litat
ive
anal
ysis
of
Nat
iona
l Res
earc
h C
orp
orat
ion
Can
ada
adul
t in
pat
ient
sur
vey
resp
onse
s
n=16
38 r
esp
onse
s fr
om
pat
ient
s an
d h
osp
ital
dis
char
ges
from
22
units
Non
e p
rovi
ded Con
tinue
d
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J Open: first published as 10.1136/bm
jopen-2019-035157 on 22 January 2020. Dow
nloaded from
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Open access
Aut
hor(
s) a
nd
pub
licat
ion
year
Tit
leC
oun
try
of
stud
yP
urp
ose
Stu
dy
des
ign
char
acte
rist
ics
Par
tici
pan
t ch
arac
teri
stic
s
Defi
niti
on
of
inte
gra
ted
car
e us
ed
in s
tud
y
Coo
k et
al
(201
7)42
Old
er U
K s
helte
red
hou
sing
te
nant
s’ p
erce
ptio
ns o
f wel
l-
bei
ng a
nd t
heir
usag
e of
hos
pita
l se
rvic
es
UK
To e
xam
ine
shel
tere
d h
ousi
ng t
enan
ts’
view
s of
hea
lth a
nd w
ell-
bei
ng, t
he
stra
tegi
es t
hey
adop
ted
to
sup
por
t th
eir
wel
l- b
eing
and
the
ir us
e of
hea
lth a
nd
soci
al c
are
serv
ices
thr
ough
a h
ealth
nee
ds
asse
ssm
ent
Par
alle
l, th
ree-
stra
nd
mix
ed-
met
hod
s ap
pro
ach
enco
mp
assi
ng t
enan
ts’
per
cep
tions
of h
ealth
and
w
ell-
bei
ng, a
naly
sis
of
the
serv
ice’
s he
alth
and
w
ell-
bei
ng d
atab
ase
and
an
alys
is o
f em
erge
ncy
and
ele
ctiv
e ho
spita
l ad
mis
sion
s
n=97
8 te
nant
s liv
ing
in
shel
tere
d h
ousi
ngN
one
pro
vid
ed
Cow
ie e
t al
(2
009)
25E
xper
ienc
e of
con
tinui
ty o
f car
e of
pat
ient
s w
ith m
ultip
le lo
ng-
term
con
diti
ons
in E
ngla
nd
UK
To e
xam
ine
pat
ient
s’ e
xper
ienc
es o
f co
ntin
uity
of c
are
in t
he c
onte
xt o
f diff
eren
t lo
ng- t
erm
con
diti
ons
and
mod
els
of c
are,
an
d t
o ex
plo
re im
plic
atio
ns fo
r th
e fu
ture
or
gani
satio
n ca
re o
f lon
g- te
rm c
ond
ition
s
Qua
litat
ive
des
ign
with
se
mis
truc
tur e
d in
terv
iew
sn=
33 p
atie
nts
with
mul
tiple
lo
ng- t
erm
con
diti
ons
Defi
nitio
n of
‘con
tinui
ty
of c
are’
pro
vid
ed
Der
ksen
et
al
(201
2)26
A lo
cal c
onse
nsus
pro
cess
m
akin
g us
e of
focu
s gr
oup
s to
en
hanc
e th
e im
ple
men
tatio
n of
a
natio
nal i
nteg
rate
d h
ealth
car
e st
and
ard
on
obes
ity c
are
Net
herla
nds
To u
nder
stan
d e
xper
ienc
es a
nd
exp
ecta
tions
of h
ealth
care
pro
fess
iona
ls
and
pat
ient
s co
ncer
ning
op
por
tuni
ties
and
b
arrie
rs fo
r lo
cal o
verw
eigh
t/ob
esity
car
e
Exp
lora
tory
qua
litat
ive
stud
y us
ing
focu
s gr
oup
s an
d in
div
idua
l int
ervi
ews
n=24
old
er a
dul
ts li
ving
in
dep
end
ently
in Z
wol
le,
Net
herla
nds
‘Inte
grat
ed c
are
incl
udes
pre
vent
ion,
sc
reen
ing,
dia
gnos
is,
trea
tmen
t, r
elap
se
pre
vent
ion
and
long
te
rm c
are’
no
sour
ce.
‘The
cen
tral
aim
of
rece
nt g
uid
elin
es
and
inte
grat
ed h
ealth
st
and
ard
s is
the
or
gani
satio
n of
pat
ient
or
ient
ed c
are
and
the
su
pp
ort
of p
atie
nts'
se
lf m
anag
emen
t’
Eb
rahi
mi e
t al
(2
017)
36E
ffect
s of
a c
ontin
uum
of c
are
inte
rven
tion
on fr
ail e
lder
s’ s
elf-
ra
ted
hea
lth, e
xper
ienc
es o
f se
curit
y/sa
fety
and
sym
pto
ms:
a
rand
omis
ed c
ontr
olle
d t
rial
Sw
eden
To e
valu
ate
the
effe
cts
of t
he in
terv
entio
n on
se
lf- ra
ted
hea
lth, e
xper
ienc
es o
f sec
urity
/sa
fety
and
sym
pto
ms
Non
- blin
ded
con
trol
led
tria
ln=
161
frai
l old
er a
dul
ts a
t hi
gh r
isk
of fu
rthe
r ca
re
cons
ump
tion
Non
e p
rovi
ded
Free
man
an
d H
ughe
s (2
010)
47
Con
tinui
ty o
f car
e an
d t
he p
atie
nt
exp
erie
nce:
an
inq
uiry
into
the
q
ualit
y of
gen
eral
pra
ctic
e in
E
ngla
nd
UK
To e
xam
ine
cont
inui
ty o
f car
e in
gen
eral
p
ract
ice,
with
a p
artic
ular
em
pha
sis
on
und
erst
and
ing
‘goo
d c
ontin
uity
’ fro
m t
he
pat
ient
’s p
oint
of v
iew
, con
sid
erin
g th
e d
iffer
ent
typ
es o
f con
tinui
ty d
istin
guis
hed
b
y re
sear
cher
s an
d t
heir
rela
tions
hip
to
othe
r as
pec
ts o
f qua
lity
in p
rimar
y ca
re, a
nd
asse
ssin
g th
e st
ate
of t
he a
rt o
f mea
surin
g co
ntin
uity
of c
are
Mix
ed- m
etho
ds
des
ign
invo
lvin
g a
sear
ch o
f p
ublis
hed
res
earc
h an
d
othe
r re
leva
nt d
ocum
ents
, fo
llow
ing
up le
ads
from
ke
y so
urce
s an
d in
div
idua
l in
terv
iew
s w
ith G
Ps
and
ot
her
mem
ber
s of
pra
ctic
e te
ams
n=3
pra
ctic
e m
anag
ers,
n=
8 G
Ps
(incl
udin
g p
artn
ers
and
tr
aine
es),
n=6
rece
ptio
nist
s an
d n
=2
nurs
es
Defi
nitio
n of
‘con
tinui
ty
of c
are’
pro
vid
ed
Tab
le 2
C
ontin
ued
Con
tinue
d
on January 28, 2020 by guest. Protected by copyright.
http://bmjopen.bm
j.com/
BM
J Open: first published as 10.1136/bm
jopen-2019-035157 on 22 January 2020. Dow
nloaded from
7Lawless MT, et al. BMJ Open 2020;10:e035157. doi:10.1136/bmjopen-2019-035157
Open access
Aut
hor(
s) a
nd
pub
licat
ion
year
Tit
leC
oun
try
of
stud
yP
urp
ose
Stu
dy
des
ign
char
acte
rist
ics
Par
tici
pan
t ch
arac
teri
stic
s
Defi
niti
on
of
inte
gra
ted
car
e us
ed
in s
tud
y
Hep
wor
th e
t al
(2
013)
27‘W
orki
ng w
ith t
he t
eam
’: an
ex
plo
rato
ry s
tud
y of
imp
rove
d
typ
e 2
dia
bet
es m
anag
emen
t in
a
new
mod
el o
f int
egra
ted
prim
ary/
seco
ndar
y ca
re
Aus
tral
iaTo
exp
lore
how
a n
ew m
odel
of i
nteg
rate
d
prim
ary/
seco
ndar
y ca
re fo
r ty
pe
2 d
iab
etes
m
anag
emen
t re
late
d t
o im
pro
ved
dia
bet
es
man
agem
ent
in a
sel
ecte
d g
roup
of p
atie
nts
Qua
litat
ive
rese
arch
d
esig
n w
ith s
emis
truc
ture
d
inte
rvie
ws
and
crit
ical
cas
e sa
mp
ling
n=10
pat
ient
s w
ith t
ype
2 d
iab
etes
att
end
ing
the
Bris
ban
e S
outh
Com
ple
x D
iab
etes
Ser
vice
Non
e p
rovi
ded
Jack
son
et a
l (2
012)
28P
atie
nt jo
urne
y: im
plic
atio
ns fo
r im
pro
ving
and
inte
grat
ing
care
fo
r ol
der
ad
ults
with
chr
onic
ob
stru
ctiv
e p
ulm
onar
y d
isea
se
Can
ada
To s
umm
aris
e th
e ex
per
ienc
es o
f fou
r p
atie
nts
with
CO
PD
as
they
inte
ract
ed
with
the
hea
lthca
re s
yste
m o
ver
a 3-
mon
th
per
iod
follo
win
g ho
spita
l dis
char
ge, w
ith
a vi
ew t
o in
form
ing
the
dev
elop
men
t of
a
mor
e in
tegr
ated
ap
pro
ach
to s
ervi
ce
del
iver
y an
d im
pro
ved
qua
lity
of c
are
Cas
e st
udy
met
hod
olog
y us
ing
sem
istr
uctu
red
in
terv
iew
s an
d p
atie
nts’
lo
gs
n=3
old
er a
dul
ts w
ith a
p
rimar
y or
sec
ond
ary
dia
gnos
is o
f CO
PD
who
w
ere
dis
char
ged
hom
e or
to
seni
ors’
hou
sing
‘Prin
cip
les
to
achi
eve
a fu
lly
inte
grat
ed h
ealth
sy
stem
…in
clud
e (a
) com
pre
hens
ive
serv
ices
acr
oss
the
care
con
tinuu
m; (
b)
pat
ient
focu
s; (c
) ge
ogra
phi
c co
vera
ge
and
ros
terin
g; (d
) st
and
ard
ized
car
e d
eliv
ery
thro
ugh
inte
rpro
fess
iona
l te
ams;
(e) p
erfo
rman
ce
man
agem
ent;
(f)
info
rmat
ion
syst
ems;
(g
) org
aniz
atio
nal
cultu
re a
nd le
ader
ship
; (h
) phy
sici
an
inte
grat
ion;
(i)
gove
rnan
ce s
truc
ture
; an
d (j
) fina
ncia
l m
anag
emen
t’
Jeon
et
al
(201
0)29
Ach
ievi
ng a
bal
ance
d li
fe in
the
fa
ce o
f chr
onic
illn
ess
Aus
tral
iaTo
dev
elop
an
in- d
epth
und
erst
and
ing
of
the
exp
erie
nce
of p
atie
nts
and
fam
ily c
arer
s af
fect
ed b
y ch
roni
c ill
ness
tha
t w
ill b
e th
e b
asis
on
whi
ch t
o p
rop
ose
pol
icy
and
he
alth
sys
tem
inte
rven
tions
tha
t ar
e p
atie
nt
cent
red
Qua
litat
ive
des
ign
with
se
mis
truc
ture
d in
- dep
th
inte
rvie
ws
n=52
pat
ient
s (4
6% fe
mal
e,
67%
age
d ≥
65 y
ears
, 21%
In
dig
enou
s A
ustr
alia
ns, 2
1%
cultu
rally
and
ling
uist
ical
ly
div
erse
(CA
LD))
and
n=
14
care
rs (9
3% fe
mal
e, 5
0%
aged
≥65
yea
rs, 0
%
Ind
igen
ous,
36%
CA
LD)
Non
e p
rovi
ded
John
ston
et
al
(200
9)43
Des
igni
ng a
nd t
estin
g a
web
- bas
ed in
terf
ace
for
self-
m
onito
ring
of e
xerc
ise
and
sy
mp
tom
s fo
r ol
der
ad
ults
with
ch
roni
c ob
stru
ctiv
e p
ulm
onar
y d
isea
se
US
ATo
des
crib
e ou
r p
roce
ss o
f dev
elop
ing
a se
t of
inte
grat
ed t
ools
to
sup
por
t co
llab
orat
ive
sym
pto
m a
nd e
xerc
ise
mon
itorin
g fo
r p
atie
nts
with
chr
onic
ob
stru
ctiv
e p
ulm
onar
y d
isea
se (C
OP
D) w
ho m
ay b
e ex
per
ienc
ing
bre
athi
ng d
ifficu
lties
Mix
ed- m
etho
ds
four
- p
hase
des
ign
invo
lvin
g se
mis
truc
ture
d in
terv
iew
s,
a ta
rget
ed r
evie
w o
f p
ublic
ly a
vaila
ble
sel
f-
mon
itorin
g to
ols,
sof
twar
e d
evel
opm
ent
and
fiel
d
usab
ility
tes
ting
n=14
pat
ient
s w
ith C
OP
DN
one
pro
vid
ed
Tab
le 2
C
ontin
ued
Con
tinue
d
on January 28, 2020 by guest. Protected by copyright.
http://bmjopen.bm
j.com/
BM
J Open: first published as 10.1136/bm
jopen-2019-035157 on 22 January 2020. Dow
nloaded from
8 Lawless MT, et al. BMJ Open 2020;10:e035157. doi:10.1136/bmjopen-2019-035157
Open access
Aut
hor(
s) a
nd
pub
licat
ion
year
Tit
leC
oun
try
of
stud
yP
urp
ose
Stu
dy
des
ign
char
acte
rist
ics
Par
tici
pan
t ch
arac
teri
stic
s
Defi
niti
on
of
inte
gra
ted
car
e us
ed
in s
tud
y
Jub
elt
et a
l (2
014)
37P
atie
nt r
atin
gs o
f cas
e m
anag
ers
in a
med
ical
hom
e: a
ssoc
iatio
ns
with
pat
ient
sat
isfa
ctio
n an
d
heal
th c
are
utili
zatio
n
US
ATo
mea
sure
the
ass
ocia
tion
of p
atie
nt
per
cep
tions
of p
atie
nt- c
entr
ed m
edic
al
hom
e ca
se m
anag
er p
erfo
rman
ce w
ith
over
all s
atis
fact
ion
and
sub
seq
uent
he
alth
care
util
isat
ion
Ret
rosp
ectiv
e co
hort
st
udy
of p
atie
nts
with
in
an in
tegr
ated
hea
lthca
re
syst
em
n=14
15 p
atie
nts
with
cl
inic
ally
com
ple
x co
nditi
ons
Non
e p
rovi
ded
Liss
et
al
(201
1)38
Pat
ient
- rep
orte
d c
are
coor
din
atio
n: a
ssoc
iatio
ns w
ith
prim
ary
care
con
tinui
ty a
nd
spec
ialty
car
e us
e
US
ATo
inve
stig
ate
the
asso
ciat
ion
bet
wee
n ca
re
coor
din
atio
n an
d c
ontin
uity
of p
rimar
y ca
re
and
diff
eren
ces
in t
his
asso
ciat
ion
by
leve
l of
sp
ecia
lty c
are
use
Cro
ss- s
ectio
nal s
tud
y in
volv
ing
surv
ey
info
rmat
ion
on p
atie
nt
exp
erie
nces
and
au
tom
ated
hea
lthca
re
utili
satio
n d
ata
n=20
51 M
edic
are
enro
llees
w
ith s
elec
t ch
roni
c co
nditi
ons
in a
n in
tegr
ated
he
alth
care
del
iver
y sy
stem
in
Was
hing
ton
Sta
te, U
SA
Defi
nitio
n of
‘con
tinui
ty
of c
are’
pro
vid
ed
Nat
iona
l Vo
ices
(201
2)48
Prin
cip
les
for
inte
grat
ed c
are
UK
To d
escr
ibe
‘suc
cess
’ fro
m t
he p
ersp
ectiv
e of
pat
ient
s an
d t
o d
iscu
ss m
easu
res
of
succ
ess
Rep
ort
with
lite
ratu
re
revi
ewN
AIn
tegr
ated
car
e m
entio
ned
but
not
d
efine
d
Nat
iona
l Vo
ices
(201
3)49
Inte
grat
ed c
are:
wha
t d
o p
atie
nts,
ser
vice
use
rs a
nd
care
rs w
ant?
UK
To s
umm
aris
e vi
ews
of p
atie
nts,
ser
vice
us
ers
and
car
ers
rega
rdin
g w
hat
they
w
ant
from
inte
grat
ed c
are,
con
sid
erin
g im
plic
atio
ns fo
r ed
ucat
ion,
tra
inin
g an
d
pub
lic h
ealth
Rep
ort
with
lite
ratu
re
revi
ewN
AIn
tegr
ated
car
e m
entio
ned
but
not
d
efine
d
Osb
orn
et a
l (2
014)
39In
tern
atio
nal s
urve
y of
old
er
adul
ts fi
nds
shor
tcom
ings
in
acc
ess,
coo
rdin
atio
n an
d
pat
ient
- cen
tred
car
e
Ele
ven
coun
trie
s,
incl
udin
g A
ustr
alia
, U
SA
, UK
, C
anad
a,
New
Zea
land
To a
sses
s ho
w t
he h
ealth
sys
tem
per
form
s,
with
a p
artic
ular
focu
s on
acc
ess
to c
are,
ch
roni
c co
nditi
ons
and
car
e co
ord
inat
ion,
p
atie
nt e
ngag
emen
t, s
ocia
l car
e ne
eds
and
en
d- o
f- lif
e ca
re p
lann
ing
Com
put
er- a
ssis
ted
te
lep
hone
inte
rvie
ws
of
natio
nally
rep
rese
ntat
ive
rand
om s
amp
les
in 1
1 co
untr
ies
n=15
617
old
er a
dul
ts a
ged
≥6
5 ye
ars
cont
acte
d b
y m
arke
t re
sear
ch fi
rms
via
mob
ile a
nd/o
r la
ndlin
e p
hone
Non
e p
rovi
ded
Rim
mer
et
al
(201
5)30
The
des
ign
and
initi
al p
atie
nt
eval
uatio
n of
an
inte
grat
ed c
are
pat
hway
for
faec
al in
cont
inen
ce:
a q
ualit
ativ
e st
udy
UK
To d
escr
ibe
a no
vel i
nteg
rate
d c
are
pat
hway
fo
r th
e m
anag
emen
t of
faec
al in
cont
inen
ce
(FI)
and
exa
min
e th
e ex
per
ienc
es o
f pat
ient
s w
ith F
I in
rela
tion
to t
his
pat
hway
Focu
s gr
oup
s an
d n
arra
tive
inte
rvie
ws
n=13
pat
ient
s w
ith F
I‘In
tegr
ated
car
e p
athw
ays
(ICP
s)
are
mul
tidis
cip
linar
y p
lans
tha
t p
red
ict
the
cour
se o
f eve
nts
in t
he
trea
tmen
t of
pat
ient
s w
ith s
imila
r p
rob
lem
s.
The
aim
of a
n IC
P is
to
enh
ance
the
qua
lity
of c
are
by
imp
rovi
ng
pat
ient
out
com
es,
pro
mot
ing
pat
ient
sa
fety
, inc
reas
ing
pat
ient
sat
isfa
ctio
n an
d o
ptim
isin
g th
e us
e of
res
ourc
es’
Tab
le 2
C
ontin
ued
Con
tinue
d
on January 28, 2020 by guest. Protected by copyright.
http://bmjopen.bm
j.com/
BM
J Open: first published as 10.1136/bm
jopen-2019-035157 on 22 January 2020. Dow
nloaded from
9Lawless MT, et al. BMJ Open 2020;10:e035157. doi:10.1136/bmjopen-2019-035157
Open access
Aut
hor(
s) a
nd
pub
licat
ion
year
Tit
leC
oun
try
of
stud
yP
urp
ose
Stu
dy
des
ign
char
acte
rist
ics
Par
tici
pan
t ch
arac
teri
stic
s
Defi
niti
on
of
inte
gra
ted
car
e us
ed
in s
tud
y
Rol
and
et
al
(201
2)44
Cas
e m
anag
emen
t fo
r at
- ris
k el
der
ly p
atie
nts
in t
he
Eng
lish
inte
grat
ed c
are
pilo
ts:
obse
rvat
iona
l stu
dy
of s
taff
and
pat
ient
exp
erie
nce
and
se
cond
ary
care
util
isat
ion
UK
To r
epor
t th
e ou
tcom
e of
inte
nsiv
e ca
se
man
agem
ent
for
old
er a
dul
ts a
t ris
k of
em
erge
ncy
hosp
ital a
dm
issi
on
Mix
ed- m
etho
ds
app
roac
h w
ith p
rein
terv
entio
n an
d
pos
tinte
rven
tion
surv
ey
que
stio
nnai
res
sent
to
heal
th a
nd s
ocia
l car
e st
aff d
irect
ly in
volv
ed
or im
pac
ted
by
the
inte
rven
tion;
pat
ient
q
uest
ionn
aire
s; a
naly
sis
of
hosp
ital u
tilis
atio
n us
ing
exis
ting
dat
a, a
naly
sed
by
diff
eren
ce in
diff
eren
ces
anal
ysis
n=46
0 p
atie
nts
who
wer
e p
art
of t
he in
tegr
ated
car
e p
ilot
who
rec
eive
d t
he c
ase
man
agem
ent
inte
rven
tion
and
ret
urne
d b
oth
pre
/p
ostq
uest
ionn
aire
s
‘[Int
egra
ted
car
e is
in
tend
ed] t
o ac
hiev
e m
ore
per
sona
l, re
spon
sive
car
e an
d b
ette
r he
alth
ou
tcom
es fo
r a
loca
l p
opul
atio
n’
Rya
n et
al
(201
3)45
Com
par
ing
pat
ient
and
pro
vid
er
per
cep
tions
of h
ome-
and
co
mm
unity
- bas
ed s
ervi
ces:
so
cial
net
wor
k an
alys
is a
s a
serv
ice
inte
grat
ion
met
ric
Can
ada
To e
xam
ine
and
com
par
e p
rovi
der
and
p
atie
nt p
erce
ptio
ns o
f tea
mw
ork
and
co
llab
orat
ion
amon
g th
e ho
me
and
co
mm
unity
- bas
ed c
are
pro
vid
ers
in fo
ur
case
stu
die
s
Cas
e st
udy
des
ign
invo
lvin
g so
cial
net
wor
k vi
sual
isat
ions
n=4
com
mun
ity- d
wel
ling
frai
l ol
der
ad
ults
Non
e p
rovi
ded
Sad
a et
al
(201
1)31
Prim
ary
care
and
com
mun
icat
ion
in s
hare
d c
ance
r ca
re: a
q
ualit
ativ
e st
udy
US
ATo
exp
lore
the
per
cep
tions
of p
rimar
y ca
re p
hysi
cian
s an
d o
ncol
ogis
ts’
role
s, r
esp
onsi
bili
ties
and
pat
tern
s of
co
mm
unic
atio
n re
late
d t
o sh
ared
can
cer
care
in t
hree
inte
grat
ed h
ealth
sys
tem
s th
at
use
elec
tron
ic h
ealth
rec
ord
s
Qua
litat
ive
des
ign
with
se
mis
truc
ture
d in
terv
iew
sn=
10 m
ale
pat
ient
s w
ith
canc
erD
efini
tion
of ‘s
hare
d
care
’ pro
vid
ed
Sha
rma
(201
4)40
Inte
grat
ed c
are
of t
he d
iab
etic
- on
colo
gy p
atie
ntU
SA
To m
easu
re t
he e
ffect
on
emer
genc
y d
epar
tmen
t, o
bse
rvat
ion
and
hos
pita
l ad
mis
sion
s fo
r p
atie
nts
with
can
cer
with
d
iab
etes
who
wer
e se
en b
y th
e D
iab
etic
O
ncol
ogy
Pro
gram
(DO
P).
A s
econ
dar
y ai
m in
clud
ed e
valu
atio
n of
pat
ient
sa
tisfa
ctio
n w
ith c
are
coor
din
atio
n an
d
pat
ient
em
pow
erm
ent
with
dia
bet
es s
elf-
m
anag
emen
t fo
r th
e p
atie
nts
who
wer
e se
en b
y th
e D
OP.
Bef
ore
and
aft
er s
tud
y in
volv
ing
anal
ysis
of c
laim
s d
ata
of a
dul
t p
atie
nts
with
can
cer
with
dia
bet
es
bef
ore
and
aft
er t
he D
OP
n=98
pat
ient
s w
ith a
d
iagn
osis
of c
ance
r, hi
stor
ical
or
activ
e hy
per
glyc
aem
ia, p
re-
dia
bet
es, o
r an
y ty
pe
of
dia
bet
es, a
tten
din
g ho
spita
l-
affil
iate
d o
ncol
ogy
pra
ctic
es,
und
er a
ctiv
e tr
eatm
ent
Defi
nitio
n of
‘car
e co
ord
inat
ion’
pro
vid
ed
Tab
le 2
C
ontin
ued
Con
tinue
d
on January 28, 2020 by guest. Protected by copyright.
http://bmjopen.bm
j.com/
BM
J Open: first published as 10.1136/bm
jopen-2019-035157 on 22 January 2020. Dow
nloaded from
10 Lawless MT, et al. BMJ Open 2020;10:e035157. doi:10.1136/bmjopen-2019-035157
Open access
Aut
hor(
s) a
nd
pub
licat
ion
year
Tit
leC
oun
try
of
stud
yP
urp
ose
Stu
dy
des
ign
char
acte
rist
ics
Par
tici
pan
t ch
arac
teri
stic
s
Defi
niti
on
of
inte
gra
ted
car
e us
ed
in s
tud
y
Ste
vens
(2
014)
46A
n ex
plo
ratio
n of
ear
ly p
allia
tive
care
in a
dul
t p
atie
nts
with
cy
stic
fib
rosi
s an
d h
ealth
care
p
rofe
ssio
nals
UK
To e
xplo
re t
he e
xper
ienc
e an
d p
erce
ptio
ns
of p
atie
nts
with
cys
tic fi
bro
sis
(CF)
and
st
aff r
egar
din
g p
allia
tive
care
and
the
ac
cep
tab
ility
of t
his
as a
ser
vice
ear
ly in
the
p
atie
nt’s
dis
ease
tra
ject
ory
Mix
ed- m
etho
ds
des
ign
invo
lvin
g a
focu
s gr
oup
, a
natio
nal s
urve
y an
d p
atie
nt
inte
rvie
ws
n=8
pat
ient
s w
ith C
F‘In
tegr
ated
car
e re
late
s to
prin
cip
les
for
del
iver
y of
car
e th
at
aim
s to
imp
rove
the
p
atie
nt’s
exp
erie
nce
thro
ugh
imp
rove
d
coor
din
atio
n of
car
e.
Inte
grat
ion
is t
he
brin
ging
tog
ethe
r of
m
etho
ds,
pro
cess
es
and
mod
els
that
hel
p
brin
g th
is a
bou
t’
Tosc
an e
t al
(2
012)
32In
tegr
ated
tra
nsiti
onal
car
e:
pat
ient
, inf
orm
al c
areg
iver
and
he
alth
car
e p
rovi
der
per
spec
tives
on
car
e tr
ansi
tions
for
old
er
per
sons
with
hip
frac
ture
Can
ada
To d
eter
min
e th
e co
re fa
ctor
s re
late
d t
o p
oorly
inte
grat
ed c
are
whe
n p
atie
nts
with
hi
p fr
actu
re t
rans
ition
bet
wee
n ca
re s
ettin
gs
Qua
litat
ive
focu
sed
et
hnog
rap
hic
stud
y us
ing
ind
ivid
ual i
nter
view
s an
d
rep
eate
d o
bse
rvat
ions
n=6
pat
ient
s ag
ed ≥
65
year
s w
ith h
ip fr
actu
re w
ith
no c
ogni
tive
imp
airm
ent
able
to
read
and
writ
e in
E
nglis
h; n
=6
info
rmal
car
ers;
n=
18 h
ealth
care
pro
vid
ers
invo
lved
in t
he a
dm
issi
on o
r d
isch
arge
of t
he p
atie
nt
Defi
nitio
n of
‘con
tinui
ty
of c
are’
pro
vid
ed
Vat
et a
l (2
015)
33R
easo
ns fo
r re
turn
ing
to t
he
emer
genc
y d
epar
tmen
t fo
llow
ing
dis
char
ge fr
om a
n in
tern
al
med
icin
e un
it: p
ersp
ectiv
es o
f p
atie
nts
and
the
liai
son
nurs
e cl
inic
ian
Can
ada
To u
nder
stan
d p
atie
nts’
rea
sons
for
retu
rnin
g to
em
erge
ncy
dep
artm
ent
follo
win
g ho
spita
lisat
ion
Qua
litat
ive
des
crip
tive
app
roac
h w
ith in
- dep
th
ind
ivid
ual i
nter
view
s
n=8
old
er p
atie
nts
with
ch
roni
c ill
ness
esN
one
pro
vid
ed
Wod
skou
et
al
(201
4)34
A q
ualit
ativ
e st
udy
of in
tegr
ated
ca
re fr
om t
he p
ersp
ectiv
es o
f p
atie
nts
with
chr
onic
ob
stru
ctiv
e p
ulm
onar
y d
isea
se a
nd t
heir
rela
tives
Den
mar
kTo
exa
min
e ho
w p
atie
nts
with
CO
PD
an
d t
heir
rela
tives
exp
erie
nce
inte
grat
ed
care
acr
oss
care
set
tings
aft
er t
he
imp
lem
enta
tion
of a
CO
PD
dis
ease
m
anag
emen
t p
rogr
amm
e
Qua
litat
ive
des
ign
with
focu
s gr
oup
s an
d
sem
istr
uctu
red
inte
rvie
ws
n=34
pat
ient
s w
ith C
OP
DN
one
pro
vid
ed
GP,
gen
eral
pra
ctiti
oner
; IC
T, In
form
atio
n an
d C
omm
unic
atio
n Te
chno
logy
; NA
, not
ap
plic
able
.
Tab
le 2
C
ontin
ued
on January 28, 2020 by guest. Protected by copyright.
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j.com/
BM
J Open: first published as 10.1136/bm
jopen-2019-035157 on 22 January 2020. Dow
nloaded from
11Lawless MT, et al. BMJ Open 2020;10:e035157. doi:10.1136/bmjopen-2019-035157
Open access
of acknowledgement of the influence of the researcher on the research or vice versa20–23 25–28 30 31 33 34 37 40 41 43 45; lack of a statement about the cultural or theoretical posi-tion of the researcher21–23 25–27 29–31 33 34 37 41 43 45; and a lack of congruity between the stated philosophical or theoretical perspective and the research method-ology.21 22 24–27 29–34 37 40 For quantitative studies, the most common limitation was inadequate consideration of confounding factors (100%).
Synthesis of findingsFive themes were identified reflecting older adults’ experiences and views of integrated care: (1) access and availability; (2) involvement, initiative and follow- up; (3) communication and information; (4) referral and care transitions; and (5) coordination and cooperation.
Access and availabilityParticipants in 10 studies identified the ability to access healthcare providers and services as crit-ical.21 25 27–29 34 36 41 47 49 Access was generally discussed in relation to: physical accessibility,21 25 28 34 conve-nient access to a known and trusted professional when needed21 25 28 34 47 49; and access difficulties due to service eligibility restrictions, lack of formal home support and/or the unavailability of needed services or supports in different geographical locations.28 34 49 Three papers discussed difficulties associated with the physical accessi-bility of services.25 28 34 Problems related to physical access caused significant anxiety for participants, especially when these issues were compounded by unexpectedly long waiting times.25
Access was discussed in relation to the continuity of relationships in 10 articles.21 23 29 34–36 42–44 48 Participants generally spoke of relationship continuity in terms of the establishment and maintenance of relationships between patients, their carers/families and a known and trusted health or social care professional, as well as positive health and psychosocial impacts of such rela-tionships.22 23 25 47 One report47 stated that patients ‘have clear preferences’ regarding seeing a familiar healthcare professional, such as a general practitioner (GP), giving this preference greater priority still when problems are chronic or distressing. Although patients valued having a long- standing relationship with a single provider, they were prepared to forgo seeing a familiar provider in favour of quick access.47
Nine studies discussed the applicability of technologies as part of integrated care approaches for older popula-tions.21 28 31 34 35 41 43 48 49 Participants viewed technology as having an important role, particularly when they expe-rienced difficulty in accessing services, when care plans became increasingly complex and/or were updated repeatedly, and when additional information was needed urgently.21 48 49 Three studies described technical and experiential factors associated with the successful imple-mentation of technologies.35 41 43 Participants in these studies identified user- friendliness34 and supported
self- care41 43 as key factors influencing their views on specific technologies.
Involvement, initiative and follow-upParticipants wanted to be involved in decisions about their care and treatment in accordance with their needs, preferences and capacities at the time of the encounter.20 22 26 28 32 34 39 48 49 Although participants gener-ally expected to be involved in decisions regarding their care, treatment and medicines,49 they often felt that care was not ‘centred’ on them.32 Some participants did not want, or were unable, to make their own healthcare deci-sions, stating that they preferred to leave decisions up to their family doctor, particularly those related to referral.22 Others expressed that although they preferred their family doctor to consult with them, they ultimately wanted to be kept informed and given the opportunity to make their own decisions with the support of health profes-sionals.22 28 49 Participants felt that there was less scope for them to make decisions when consulting with specialists26 or when planning for discharge from hospital.20
The importance of initiative and follow- up was discussed in seven articles.22 26 28 34 44 48 49 Participants expected providers to demonstrate initiative by being knowledge-able about their condition and the patient ‘as a person’,49 considering the applicability of diagnostic investigation, regularly reviewing patients’ care and treatment and opening up discussions about referral and/or patients’ home care needs.34 48 Participants expected providers to take responsibility for following up on previously initiated actions. Indicators of lack of follow- up included missing test results, sudden termination of home care and support without a needs reassessment and serious health condi-tions remaining untreated for a significant period of time following initial diagnosis.34
Participants’ views on the involvement and needs of carers and families varied.20 22 28 32 48 49 Participants appre-ciated when carers accompanied them to appointments with healthcare professionals because it assisted them with comprehension, remembering care instructions, scheduling future appointments and providing personal health information when necessary.28 This was some-times difficult, however, as carers were generally ‘further removed’ from the dissemination of information.32 As a result, confusion often existed between professionals and carers about individual roles and responsibilities, resulting in ‘blurred boundaries’ and ambiguity in infor-mation sharing and flow. Patients considered it important to attend to carers’ informational and emotional needs, for example, by providing them with instructions about disease management and assessing their stress tolerance.22
Communication and informationOlder adults expected highly developed communica-tion skills and clear, comprehensive information from all providers with whom they interacted regardless of their condition(s), the care setting or the provider’s qualifica-tion.21 22 24 26–28 30 32 34 47 49 Clarity, attentiveness, empathy
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j.com/
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J Open: first published as 10.1136/bm
jopen-2019-035157 on 22 January 2020. Dow
nloaded from
12 Lawless MT, et al. BMJ Open 2020;10:e035157. doi:10.1136/bmjopen-2019-035157
Open access
and respect were generally considered to be important elements of ‘good’ patient–provider communication and relationships.21 22 24–28 34 46 47 Participants expected providers to demonstrate these traits/competencies by: listening carefully to patients’ perspectives and prefer-ences; informing patients of the relative advantages and disadvantages of referrals and treatments; providing personalised care (ie, not treating patients ‘like a number’46 49); using appropriate and accessible language; taking patients’ concerns seriously; and responding empathetically to patients’ emotions. These actions were reported to enable open communication and shared decision- making,34 increase patients’ motivation to engage in healthy lifestyle practices26 and help patients feel supported and ‘cared for’.24 27 46 Failure to recognise and respond to patients’ emotions was seen to undermine the therapeutic relationship and compromise patients’ perceptions of safety and care quality.24 34
Information was seen as vitally important as it enabled and mediated older patients’ interactions with the health-care system.22 25 28 34 48 49 Participants expressed satisfaction with the information they received from providers, partic-ularly when information was provided at important junc-tures in their care journey, and was followed up promptly and consistently.34 40 49 Having a care plan on record, and having knowledge of its contents and updates, was associ-ated with more positive patient experiences, particularly in terms of feeling involved in healthcare decision- making and care processes.48 49 Patients disliked having to ‘repeat their story’ to multiple providers—this was cited as a main reason for wanting to see a familiar healthcare provider.47 Participants appreciated when providers informed them of other available services to which they might be entitled, as well as information about how to manage financially.49 Participants additionally desired information that could help them comprehend and prepare for the impacts of their health conditions on other aspects of their life.
Participants’ preferences regarding sources of informa-tion were inconsistent.22 34 Some participants preferred contact with specialists due to their expertise and prior negative experiences of family doctors providing insuf-ficient information to address their health concerns. A majority of participants, however, preferred to receive information from a primary care provider, such as a GP, in the first instance. Nurses were identified as a valued infor-mation source due to their perceived capacity to provide extensive and comprehensible information.34 Supple-mentary (usually written) information was appreciated, and was seen as particularly useful when the presence of multimorbidity increased the complexity of developing, understanding and executing care plans.21 Participants felt it was important to be able to view their health records at any time in order to determine who to share this infor-mation with and correct any misinformation.49
Problems related to information sharing and transfer were discussed in seven articles.20 22 25 32 34 39 49 Participants felt that different providers across the primary–secondary care interface often had conflicting information about,
and opinions of, their care. Missing or conflicting infor-mation caused a great deal of uncertainty and confusion for patients and their caregivers. Relatedly, incomplete transfer and availability of relevant information to other healthcare providers was identified as a common inter-organisational and intraorganisational barrier that could lead to fragmented care, confusion or dissatisfaction.25 In hospital, some participants experienced conflicting infor-mation about discharge and were unaware which ward staff (if any) were planning their discharge,20 sometimes due to the absence of a written discharge plan.39
Referral and care transitionsTransitions between services and care settings were gener-ally seen as significant points at which older patients were particularly susceptible to lapses or losses of conti-nuity.20 22 27 28 30 32 47–49 Timely and appropriate referral was therefore perceived to be essential; participants appreciated when their family doctor was able to mini-mise the time between referral and their first consulta-tion.22 30 48 Patients expected their primary care provider to be aware of their hospital treatment and be informed of the outcome of any investigations.47 The impacts of inappropriate referrals and/or poorly managed transi-tions were particularly apparent for patients with multi-morbidity who typically received care from multiple professionals/services at different stages of the illness trajectory. Patients identified timely availability of infor-mation, effective planning and communication as key elements of well- coordinated care, as they provided a tangible sense of ‘being handed over’ from one setting/service to another.47 A lack of clarity about who should be responsible for managing information was cited as a major reason for information being lost when patients and their personal information are transferred between settings.32 Patients in the same study felt that a sense of ‘diluted ownership’ of care delivery and outcomes caused them to disengage from the management of their own care, leading to losses of personal autonomy.
When participants were not referred to services promptly, they tended to presume that providers were unaware of those services.30 Inadequate promotion of services among providers and the public was identified as a possible reason for delayed referral or non- referral.30 When moving to a new service, participants desired to be: informed in advance where they were going and the name of their primary contact person; assured that information about their views and preferences, and any agreed care plan, was passed on in advance; and given the flexibility to continue to see, as appropriate, preferred healthcare professionals who knew them and their situation well.48 49 Participants stressed the need to preserve entitlements to care despite movements between services and across geographical boundaries.
Concern about waiting times during care transitions and referrals featured in six articles.20 22 25 32–34 49 Partic-ipants felt that minimising the length of waiting time during periods of transition was important, particularly in
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j.com/
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J Open: first published as 10.1136/bm
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nloaded from
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the hospital setting or when waiting for diagnostic inves-tigation,20 22 49 but expressed concerned about ‘being rushed’, particularly during periods of recovery or when facing significant decisions about their care and/or treat-ment.32 Participants from two studies recounted negative experiences of poor care coordination between providers and services, with some explaining that they had waited up to a year before seeing a specialist following referral from their GP.25 34 Lengthy wait periods caused feelings of uncertainty, frustration and abandonment, particularly if symptoms were perceived as worsening and/or beyond patients’ self- management abilities.21 22
Coordination and cooperationTwelve studies discussed the importance of coopera-tion, coordination and communication across organi-sations, between service providers and across types of care.20 22 25–27 30 34 38 45 46 48 49 Although participants gener-ally had minimal interest in institutional/organisational priorities regarding integrated care, they wanted profes-sionals and services to ‘work together as a team around the patient’.49 Divisions between primary, secondary and community care were regarded as relatively meaningless compared with patients’ overarching desire for high- quality care and continuity, regardless of the source and/or setting.49
Participants were generally satisfied with their care when: they were referred to services without difficulty34; interprofessional communication was perceptible and shared with the patient,49 and discharge processes were perceived as consultative and coordinated.20 However, the fragmented nature of the healthcare system became apparent to patients when they needed to contact multiple providers to coordinate care, errors occurred between care transitions, or when providers disagreed on necessary care and services.34 Coordination and cooper-ation was also discussed in relation to resources, patient rights and entitlements regarding support and financing across organisations and care settings.49
In cases where little teamwork was perceived, partici-pants tended to experience inappropriate, inefficient or inconsistent referrals, reduced motivation to comply with treatment and ineffective or inappropriate responses to emergent needs or unanticipated problems.25 26 34 45 Participants viewed serious communication breakdowns (eg, failure to record drug allergies) as unacceptable and damaging to their health.25 Patients living with severe illness and/or those with multiple health problems were seen as suffering most from insufficient interprofessional cooperation.34
Four studies identified a possible tension between increased specialty care use and primary care providers’ capacity to coordinate care.22 28 34 38 Some participants recounted that although communication between their primary care provider and specialist was evident around the time of referral and the initial specialist appointment, they were unsure whether ongoing communication and follow- up was occurring.22 28 Participants perceived that
visits to specialist care added further complexity to the care delivery process and presented opportunities for gaps in care coordination to occur.22
The appointment of a care coordinator, also referred to as a case manager, was proposed as a solution to poor access, follow- up and coordination between organisations, sites, or providers in six studies.34 36 37 44 47 49 Functions of care coordinators described by participants included: acting as a primary contact person and ‘main person’ responsible for patients’ care, particularly aged and frail patients with serious and chronic conditions; coordinating care and social services across different agencies within the health-care system; regularly contacting patients and their fami-lies; offering guidance about symptom management, and providing assistance with instrumental activities of daily life.34 47 49
dISCuSSIOnThis review highlights that older adults typically define their perspectives towards integrated care with respect to the relational, informational and organisational aspects of care. These aspects of care and types of continuity were considered to be important drivers and benchmarks of person- centred integrated care, and were central features of patients’ diverse narratives. Our findings concur with previous research exploring the semantic misalignments between patient and medical narratives and understand-ings of person- centred care coordination.9 51
enablers and barriers from the perspective of older patientsBased on our synthesis of patient perspectives, several enablers and barriers were identified. Key enablers included: access arrangements that reflect patient needs and preferences regarding which services to access, the speed of access and the methods of access,21 25 27–29 34 36 41 49 appropriate user- friendly technol-ogies,28 41 clear communication coupled with appropriate information,22 24 26–28 30 34 regular contact with a familiar, trusted healthcare provider,22–24 individualised care plan-ning with appropriate patient involvement in healthcare decision- making28 34 and systems to reduce gaps in infor-mation and to enable regular follow- up.22 28 34 36
Barriers to integrated care as defined by older adults included: unavailability of needed providers and services in certain areas/jurisdictions,28 34 49 lack of opportunities to clarify patients’ needs, priorities and preferences,22 27 34 including those related to patients’ information and/or communication,22 25 28 34 47–49 conflicting information, clinical advice, treatments and/or management,22 25 34 48 49 lengthy wait times,20 22 25 33 34 47 49 limited interprofessional or multidisciplinary teamwork25 26 34 45 47–49 and relational and informational discontinuity at the primary–secondary care interface.20 22 28 32 34 39 39 47–49
Defining the meaning of integrated care from the perspectives of different stakeholders, and reconciling those perspectives, poses considerable policy and research challenges.52 Structural and organisational- based
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definitions are well founded insofar as they are driven by the need to overcome sectoral fragmentation in health-care systems.53 However, such concerns are likely to be less important to patients than their smooth, seamless and supported journey through the care system.48 49 Organ-isationally based definitions can overshadow person- centred understandings of care integration, which are needed to guide the delivery of appropriate, coordinated and responsive care. Person- centred definitions based on patient experiences capture a fundamental principal of integrated care, and offer a cogent logic as to its key objectives and success measures.
Implications for implementation and knowledge translationOur findings suggest a need to better prepare and support providers across the healthcare system to deliver coor-dinated, efficient and appropriate person- centred care within a complex milieu. The successful implementation of integrated care into practice requires providers to inter-nalise the value of the principles of integrated care while being open to new ways of working within non- traditional models of care delivery.1 7 54 Implementing sustainable integrated care systems for older adults will require multi-pronged, transformative action at the clinical (eg, facil-itating shared decision- making and goal setting) service (eg, supporting the coordination of services delivered by multidisciplinary providers) and healthcare system (eg, strengthening governance, accountability systems and financing mechanisms enabling equitable access to services) levels.55 These actions should coincide with efforts to clarify or respecify discrete tasks, roles, and responsibilities, decision- making processes, and relevant clinical and patient- reported outcome and experience measures.
Care coordination with case management was iden-tified as a critical factor in facilitating communication among providers, assisting patients to implement their care plans and enhancing access across different parts of the healthcare system.34 36 37 44 47 49 Further research into the precise role and value of care coordinators and facili-tating technologies, among other elements, in integrated care models is needed.
limitationsThis is the first review to provide a comprehensive synthesis and a quality appraisal of the literature on older adults’ perspectives in relation to integrated care. The limitations of this review mainly relate to: (1) the lack of consistency in concepts, definitions and terminology used to describe ‘integrated care’—a majority of the studies did not provide a definition of integrated care and/or used conceptually similar terms pertinent to integrated care without offering a definition or rationale; and (2) the lack of a comparison of subgroups of older patients. We acknowledge that other terms pertaining to integrated care concepts and/or activities could have been included in the search strategy. However, due to the complexity of the field and the varying definitions of integrated care
used in the literature, our initial strategy aimed to iden-tify citations focusing explicitly on older patients’ experi-ences of their care journey within various integrated care models.
It is possible that the inclusiveness of this review, which included studies undertaken on different client groups and service areas within various healthcare settings, may have compromised the specificity of the findings. Our intention was not to address a specific question with narrow parameters about patients’ experiences to retro-spectively derive new models of care that fit with the WHO definition.7 Nor was our intention to refer to older persons’ perceptions and experiences to assess the effec-tiveness of different integration models from an organ-isational health system perspective. Such an approach would be inappropriate as most aspects of integrated care management and governance occur ‘behind the scenes’47 and are generally ‘invisible’ to patients. As we have seen, patient narratives are more likely to reflect the visible and tangible aspects of service delivery, and are mainly limited to concerns regarding quality and safety, relationships, and (dysfunctional) coordination. Rather, we aimed to synthesise the available literature on patient experiences as an informed stating point to inform the design, imple-mentation and evaluation of locally relevant approaches that are: (1) underpinned by a patient- centred and system- wide view of care integration; and (2) informed by the journeys of older patients as they move between providers and services and across organisational and/or programme boundaries.8 53 Given the need for health-care systems to embrace the flexibility, contingency and complexity that characterises integrated care,8 52 a broad and inclusive approach to understanding patients’ views and experiences is justified. Recognising that a ‘one- size- fits- all’ approach is unlikely to be appropriate when it comes to integrated care delivery,8 future studies could consider coproduction solutions and the application of interpretative approaches to examine what strategies work for which group of patients and under what circum-stances, that is, identifying whom, when, how and why.56
COnCluSIOnThis review highlights that older adults define their experiences of integrated care in relation to: accessi-bility—timely access to needed services, age- friendly infrastructure, equitable financing and accessible information; care—feeling respected, heard, involved, informed and cared for; and coordination—uninterrupted care delivered smoothly across settings and services, with clear roles, responsibilities and points of contact. These patient- reported concerns are not adequately represented in current operational definitions that focus primarily on integrated care from an organisational and management perspective. The review draws attention to the humanistic and experiential nature of integrated care experiences and suggests that different patient- centric indices may be needed to assess the quality of integrated
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care and to measure the key outcomes of importance to older patients and their carers. Future work on this topic is warranted and aligns with contemporary research and policy efforts55 57 focusing on developing integrated care programmes that improve patient care experiences while reconciling the inherent complexities and tensions involved.
twitter Michael T. Lawless @mt_lawless, Amy Marshall @DrAmyMarshall and Gillian Harvey @GillHar26
Contributors MMM conceptualised the review and developed the research protocol. MMM and AM conducted the initial database search and citation screening was performed by ML, MMM, AM and GH. ML developed the original draft of the manuscript. All authors were involved in the extraction and synthesis of the data and contributed to the drafting and editing of the manuscript. All authors approved the final manuscript prior to submission.
Funding Funding from The Hospital Research Foundation (THRF), Woodville, South Australia, which is supporting the research into improving the integration of care for older people.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
data availability statement Data are available upon reasonable request. The data analysis plan outlined in the study protocol will be made available by the corresponding author immediately following publication.
Open access This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY- NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non- commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non- commercial. See: http:// creativecommons. org/ licenses/ by- nc/ 4. 0/.
OrCId idsMichael T. Lawless http:// orcid. org/ 0000- 0002- 2536- 6442Manasi Murthy Mittinty http:// orcid. org/ 0000- 0002- 2792- 2799
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