Pulmonol.
2019;25(6):311---312
www.jou nalpulmonology.o g
EDITORIAL
Pa ien
expe ience
wi h
home
espi a o y
he apies
in
Po ugal:
i
is
ime
o
mo e
o wa d
The
numbe
o
pa ien s
needing
home
espi a o y
he a-
pies
(HRT),
such
as
long- e m
oxygen
he apy
and/o
home
mechanical
en ila ion
(HMV)
in
Po ugal
is
inc easing.1 --- 3
These
he apies
help
indi iduals
o
imp o e
unc ion
and
li e
wi h
g ea e
quali y
o
li e;
and
assis
hem
o
emain
a
home,
a oiding
hospi al
eme gencies,
unscheduled
consul-
a ions
and
hospi aliza ions.4Da a
om
a
ecen ly
published
wo k
confi ms
his
inc easing
end:
in
2018,
almos
80%
o
he
HMV
specialized
cen es
we e
ea ing
>30
new
pa ien s
pe
yea ,
cu en ly
ea ing
>200
pa ien s
in
o al.5Mo e-
o e ,
he
di ec o
o
he
Na ional
P og am
o
Respi a o y
Diseases,
based
on
he
p esc ip ion
da abase,
showed
ha
in
2017
he
p e alence
ose
o
a
eco d
o
80/100.000,
e y
close
o
F ance,
he
coun y
wi h
he
highes
figu es
in
Eu ope
(C
Bá ba a
2019,
pe sonal
communica ion,
May
30 h,
Jo nadas
de
Pneumologia
CH
En e
Dou o
e
Vouga).
An
inno a i e
na ional,
pa ien -cen ed
ca e
home
espi a-
o y
model
was
implemen ed
in
Po ugal
in
20146and
he
majo
challenges
a e
o
c ea e
key
pe o mance
indica o s
in
o de
o
main ain
he
access
o
HRT,
na ional
heal hca e
se ice
sus ainabili y
and
quali y
o
ca e.
Pa ien
expe ience
is
inc easingly
ecognised
as
one
o
he
h ee
pilla s
o
quali y
in
heal hca e
oge he
wi h
clini-
cal
e ec i eness
and
sa e y7and
includes
se e al
aspec s
o
heal h
ca e
deli e y
ha
pa ien s
alue
highly
when
seek-
ing
and
ecei ing
ca e,
such
as
ge ing
imely
appoin men s,
easy
access
o
in o ma ion,
and
good
communica ion
wi h
heal hca e
p o ide s.8An
example
o
he
impo ance
o
in eg a ing
he
pa ien
expe ience
wi h
heal hca e
deli e y
and
quali y
e alua ion
is
he
inclusion
o
he
fi s
ime
o
a
dedica ed
chap e
in
he
OECD
(O ganisa ion
o
Economic
Co-ope a ion
and
De elopmen )
and
he
Eu opean
Commis-
sion
epo
‘‘Heal h
a
a
Glance:
Eu ope’’9despi e
he
ecogni ion
o
pa ien - epo ed
expe ience
is
s ill
limi ed.9
In
na ional
heal h
e e ence
documen s,
he
concep
o
pa ien
expe ience
is
qui e
new.
Acco ding
o
he
Adminis-
a i e
Rule
n.o194/2014
o
Sep embe
30 h,
he
exis ence
o
a
moni o ing
sys em
o
he
pa ien ’s
expe ience
was
defined
as
one
o
he
c i e ion
needed
o
heal hca e
uni s
be
conside ed
as
e e ence
cen es
(uni s
p o id-
ing
heal hca e,
wi h
e ified
echnical
knowledge
on
he
adminis a ion
o
high
quali y
heal h
ca e
o
pa ien s
in
ce -
ain
clinical
si ua ions).
In
2015,
an
OECD
epo
e iewing
he
quali y
o
heal h
ca e
in
Po ugal,
al eady
conce ned
wi h
cap u ing
and
epo ing
pa ien
expe ience,
iden i-
fied
he
na ional
mechanisms
o
collec
pa ien
eedback
as
being
weak.10 Ne e heless,
he
in eg a ion
o
pa ien
expe ience
seems
o
con inue
o
be
le
ou
o
ele an
doc-
umen s
conce ned
wi h
espi a o y
diseases
managemen
and
specifically
wi h
HRT.
This
is
a
conce n
no
es ic ed
o
Po ugal.
In
ac ,
in
a
ecen
e iew
conduc ed
by
he
au ho s,
om
he
15
s udies
assessing
he
p esc ip ion
o
HRT,
none
ha e
included
he
pa ien
expe ience
as
an
ou come.11 Po ugal
was
one
o
he
coun ies
wi h
high-
es
p e alence
o
HMV
in
Eu ope
(9.3
pe
100,000
people)
acco ding
o
2001
Eu o en
su ey.2Conside ing
his
s udy
ook
place
almos
18
yea s
ago,
he
cu en
analysis
o
he
da a
ga he ed
by
na ional
HRT
egis e s
would
be
ex emely
use ul
o
in o m
e idence-based
heal hca e
policies.
Re e ence
documen s
need
o
do
mo e
han
ad oca e
he
impo ance
o
measu ing
pa ien
expe ience.
Heal hca e
p o ide s,
adminis a o s
and
policy-make s
need
o
know
which
ools
a e
a ailable
o
collec ing
pa ien s’
pe cep ions
o
heal hca e
p o ision
and
unde s and
how
hey
can
be
used
o
imp o e
heal hca e
quali y.
The
a o emen ioned
e iew
b iefly
desc ibed
14
pa ien - epo ed
expe ience
measu es
(PREMs).11 Un o una ely,
hese
PREMS
we e
mos ly
gene ic
and
a ge ing
di e se
se ings,
and
none
was
specific
o
assessing
he
pa ien
expe ience
wi h
HRT.
The
ansla-
ion/cul u al
adap a ion
o
exis en
PREMs
o
he
Po uguese
popula ion
and/o
he
de elopmen
o
a
specific
PREM
o
pa ien s
on
HRT
should
hus
be
a
p io i y.
These
ins u-
men s
could
hen
be
used
o
moni o
pa ien
expe ience
and
be
in eg a ed
as
quali y
indica o s
o
HRT
deli e y.
A
numbe
o
key-poin s
acili a ing
pa ien ’s
ea men
expe-
ience
wi h
HRT
ha e
al eady
been
iden ified
as
ele an
o
inclusion
in
a
u u e
PREM,11 howe e ,
his
knowledge
comes
mainly
om
in e na ional
s udies.12,13 S udies
explo -
ing
which
opics
a e
meaning ul
o
Po uguese
pa ien s
and
ca e s
a e
needed.
This
le e
shows
ha
he
con ibu ion
o
Po ugal
o
he
esea ch
o
pa ien
expe ience
and
HRT
p o ision
has
been
h ps://doi.o g/10.1016/j.pulmoe.2019.08.003
2531-0437/©
2019
Sociedade
Po uguesa
de
Pneumologia.
Published
by
Else ie
Espa˜
na,
S.L.U.
This
is
an
open
access
a icle
unde
he
CC
BY-NC-ND
license
(h p://c ea i ecommons.o g/licenses/by-nc-nd/4.0/).
312
EDITORIAL
limi ed
and
aises
u he
ways
o
mo ing
o wa d
in
his
eme ging
esea ch
a ea
in
he
nex
ew
yea s.
Bu
mos
impo an ly,
his
le e
unde lines
he
need
o
go
beyond
Pa ien
Repo ed
Ou come
Measu es
(PROMS)
and
c ea e
and
in eg a e
pa ien
expe ience
indica o s
----
PREMs
----
in o
e alua ion
o
he
pe o mance
o
heal hca e
se ices,
including
he
na ional
pa ien -cen ed
ca e
home
espi a-
o y
model.
Funding
C.J.
has
a
pos -doc o al
g an
(SFRH/BPD/115169/2016)
unded
by
Fundac¸ão
pa a
a
Ciência
e
a
Tecnologia
(FCT),
co-financed
by
he
Eu opean
Social
Fund
(POCH)
and
Po -
uguese
na ional
unds
om
MCTES
(Minis é io
da
Ciência,
Tecnologia
e
Ensino
Supe io ).
Decla a ions
o
in e es
None.
Re e ences
1.
Melo
I.
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a
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he
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Winck
JC
on
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o
he
HMV
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he
Respi a o y
Rehabili a ion
Commi ee
o
he
SPP.
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e
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e
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pa ien
ou comes
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heal h
ca e:
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MJ,
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JC.
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in
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o
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uni o miza ion.
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2019,
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pii:
S2531-
0437(19)30098-4
[Epub
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he
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Con e ence
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las
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MD.
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OECD/EU.
Heal h
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(accessed
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online:
h ps://doi.o g/10.1787/9789264225985-en
(accessed
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2019).
11.
Canei as
C,
Jácome
C,
Mayo alas-Alises
S,
Ramon
Cal o
J,
Almeida
Fonseca
J,
Esca abill
J,
e
al.
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Alises
S,
Canei as
C,
Díaz-Loba o
S.
A
elephone-
based
su ey
o
cu en
ends,
habi s
and
belie s
in
pa ien s
ecei ing
po able
oxygen
he apy
in
Mad id,
Spain.
ERJ
Open
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2019;5(2),
00059-2018.
13.
Ga dene
AC,
Ewing
G,
Kuhn
I,
Fa quha
M.
Suppo
needs
o
pa ien s
wi h
COPD:
a
sys ema ic
li e a u e
sea ch
and
na a-
i e
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In
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Obs uc
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Cá ia
Canei asa,b,∗,1,
C is ina
Jácomec,d,1,
Sag a io
Mayo alas-Alisese,
José
Ramon-Cal o ,
João
Almeida
Fonsecac,g,h,
Sal ado
Diaz-Loba o ,i,
Joan
Esca abillj,k,l,
João
Ca los
Winckm
aIns i u e
o
En i onmen al
Heal h
(ISAMB),
Facul y
o
Medicine,
Uni e si y
o
Lisbon,
1649-028
Lisbon,
Po ugal
bHeal hca e
Depa men ,
Nippon
Gases
Po ugal,
2600-242
Vila
F anca
de
Xi a,
Po ugal
cCINTESIS-Cen e
o
Heal h
Technology
and
Se ices
Resea ch,
Facul y
o
Medicine,
Uni e si y
o
Po o,
4200-450
Po o,
Po ugal
dRespi a o y
Resea ch
and
Rehabili a ion
Labo a o y
(Lab3R),
School
o
Heal h
Sciences
(ESSUA),
Uni e si y
o
A ei o,
3810-193
A ei o,
Po ugal
eHeal hca e
Managemen
Depa men ,
Hospi al
Qui ón
Salud
San
José,
28002
Mad id,
Spain
Heal hca e
Depa men ,
Nippon
Gases
Spain,
28020
Mad id,
Spain
gMEDCIDS
-
Depa men
o
Communi y
Medicine,
Heal h
In o ma ion
and
Decision,
Facul y
o
Medicine,
Uni e si y
o
Po o,
4200-450
Po o,
Po ugal
hAlle gy
Uni ,
Ins i u o
and
Hospi al
CUF,
4460-188
Po o,
Po ugal
iSe ice
o
Pneumology,
Hospi al
Uni e si a io
Moncloa,
28008
Mad id,
Spain
jHospi al
Clínic
de
Ba celona,
08036
Ba celona,
Spain
kMas e
Plan
o
Respi a o y
Diseases
(Minis y
o
Heal h)
&
Obse a o y
o
Home
Respi a o y
The apies
(FORES),
08028
Ba celona,
Spain
lREDISSEC
Heal h
Se ices
Resea ch
on
Ch onic
Pa ien s
Ne wo k,
Ins i u o
de
Salud
Ca los
III,
28029
Mad id,
Spain
mFacul y
o
Medicine,
Uni e si y
o
Po o,
4200-319
Po o,
Po ugal
∗Co esponding
au ho
a :
Heal hca e
Depa men ,
Nippon
Gases
Po ugal,
2600-242
Vila
F anca
de
Xi a,
Po ugal.
E-mail
add esses:
[email p o ec ed]
(C.
Canei as),
[email p o ec ed]
(C.
Jácome),
[email p o ec ed]
(S.
Mayo alas-Alises),
[email p o ec ed]
(J.
Ramon-Cal o),
[email p o ec ed]
(J.A.
Fonseca),
[email p o ec ed]
(S.
Diaz-Loba o),
[email p o ec ed]
(J.
Esca abill),
[email p o ec ed]
(J.C.
Winck).
1These
au ho s
con ibu ed
equally
o
his
wo k.
19
July
2019
A ailable
online
26
Sep embe
2019