Jou nal o
Clinical Medicine
Re iew
Pa ien Expe ience in Home Respi a o y The apies:
Whe e We A e and Whe e o Go
Cá ia Canei as 1,2,†,* , C is ina Jácome 3,4,†, Sag a io Mayo alas-Alises 5,6, JoséRamon Cal o 6,
João Almeida Fonseca 3,7,8, Joan Esca abill 9,10,11 and João Ca los Winck 12
1Ins i u e o En i onmen al Heal h (ISAMB), Facul y o Medicine, Uni e sidade de Lisboa,
1649-028 Lisboa, Po ugal
2Heal hca e Depa men , P axai Po ugal Gases, 2601-906 Lisboa, Po ugal
3CINTESIS-Cen e o Heal h Technologies and In o ma ion Sys ems Resea ch, Facul y o Medicine,
Uni e si y o Po o, 4200-450 Po o, Po ugal; [email p o ec ed] (C.J.); [email p o ec ed] (J.A.F.)
4Respi 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
5Se ice o Pneumology, Hospi al Uni e si a io Moncloa, 28008 Mad id, Spain; [email p o ec ed]
6Heal hca e Depa men , P axai Spain, 28020 Mad id, Spain; jose_ amon_cal o@p axai .com
7MEDCIDS-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
8Alle gy Uni , Ins i u o and Hospi al CUF, 4460-188 Po o, Po ugal
9Hospi al Clínic de Ba celona, 08036 Ba celona, Spain; [email p o ec ed]
10 Mas 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
11 REDISSEC 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
12 Facul y o Medicine, Uni e si y o Po o, 4200-319 Po o, Po ugal; [email p o ec ed]
*Co espondence: [email p o ec ed]; Tel.: +351-912-556-452
†These au ho s con ibu ed equally o his wo k.
Recei ed: 5 Ma ch 2019; Accep ed: 23 Ap il 2019; Published: 24 Ap il 2019

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Abs ac :
The inc easing numbe o pa ien s ecei ing home espi a o y he apy (HRT) is imposing
a majo impac on ou ine clinical ca e and heal hca e sys em sus ainabili y. The cu en challenge is
o con inue o gua an ee access o HRT while main aining he quali y o ca e. The pa ien expe ience
is a co ne s one o high-quali y heal hca e and an eme gen a ea o clinical esea ch. This e iew
app oaches he assessmen o he pa ien expe ience in he con ex o HRT while highligh ing he
Eu opean con ibu ion o his body o knowledge. This e iew demons a es ha esea ch in his a ea
is s ill limi ed, wi h no example o a p esc ip ion model ha inco po a es he pa ien expe ience as
an ou come and no speci ic pa ien - epo ed expe ience measu es (PREMs) a ailable. This wo k also
shows ha Eu ope is leading he esea ch on HRT p o ision. The de elopmen o a speci ic PREM
and he in eg a ion o PREMs in o he assessmen o p esc ip ion models should be clinical esea ch
p io i ies in he nex se e al yea s.
Keywo ds:
Long- e m oxygen he apy; home mechanical en ila ion; pa ien - epo ed expe ience
measu es; quali y o ca e; heal hca e; sus ainabili y
1. In oduc ion
Long- e m oxygen he apy (LTOT) and/o home mechanical en ila ion (HMV) a e well-es ablished
he apies o pa ien s wi h ch onic espi a o y ailu e, such as hose wi h ch onic obs uc i e pulmona y
disease (COPD), neu omuscula diseases, and obs uc i e sleep apnea (OSA), among o he s. These
J. Clin. Med. 2019,8, 555; doi:10.3390/jcm8040555 www.mdpi.com/jou nal/jcm
J. Clin. Med. 2019,8, 555 2 o 24
he apies ep esen key se ices in he home espi a o y he apy (HRT) p o ided o hese pa ien s.
Inc easing numbe s o pa ien s ecei ing HRT a e epo ed no only in Eu ope bu also wo ldwide [
1
–
5
].
Thus, HRT is imposing a majo impac on clinical ca e and heal hca e sys ems. O e he nex se e al
yea s, he main challenge will be o ensu e a sus ainable heal hca e sys em o con inue o gua an ee
access o HRT while main aining he quali y o ca e.
Acco ding o he Wo ld Heal h O ganiza ion, quali y o ca e is de ined as “ he ex en o which heal h
ca e se ices p o ided o indi iduals and pa ien popula ions imp o e desi ed heal h ou comes.
In o de o
achie e his, heal h ca e mus be sa e, e ec i e, imely, e icien , equi able and people-cen e ed” [
6
].
A necessa y s ep in he p ocess o main aining and imp o ing quali y is o moni o and e alua e he quali y
o heal hca e in ou ine clinical p ac ice. Based on he eac i e, disease- ocused, and biomedical model,
he indica o s o quali y ha e been mainly es ic ed o adi ional clinical me ics. A numbe o s udies
conduc ed o e he las ew decades ha e add essed he bene icial e ec s o HRT on mo bidi y, mo ali y,
and ad e se ou comes, as well as he a ia ions in HRT p o ision among coun ies [
5
,
7
,
8
]. Howe e , hese
me ics alone do no p o ide a comple e pic u e o HRT quali y.
The pa ien ’s expe ience o ea men is a co ne s one o high-quali y heal hca e [
9
]. Only by
analyzing he ela ional and unc ional aspec s o he pa ien expe ience is i possible o assess he
ex en o which pa ien s a e ecei ing ca e ha is in line wi h hei p e e ences, needs, and alues.
The in eg a ion o he pa ien expe ience wi h heal hca e deli e y and quali y e alua ion a e key s eps
in mo ing owa d pa ien -cen e ed and pe sonalized ca e [
10
]. As Doyle e al. sugges ed, he pa ien ’s
expe ience is he hi d pilla o quali y, along wi h clinical sa e y and e ec i eness [
11
]. Howe e , i is
only in ecen yea s ha pa ien s’ pe cep ions o heal hca e p o ision ha e s a ed o ecei e a en ion.
This e iew app oaches he assessmen o he pa ien expe ience in he clinical con ex o HRT
while highligh ing he Eu opean con ibu ion o his eme ging body o knowledge.
2. Pa ien Expe ience in he Con ex o HRT
The pa ien expe ience in he con ex o HRT is e iewed wi h a ocus on wo main a eas: (1)
HRT p esc ip ion models and he inclusion o he pa ien expe ience as an ou come o hese models
and (2) me hods used o assess he pa ien expe ience. To add ess hese wo aims, a na a i e
e iew was conduc ed. The sea ch, al hough no sys ema ic in na u e, included sea ches in elec onic
da abases (PubMed, Medline, ISI Web o Knowledge and Google Schola ), as well as hand sea ches
(expe consul a ion and a e iew o he e e ence lis s in he included pape s). The da abases we e
sea ched be ween July and Decembe 2018 using opic- ela ed e ms, such as oxygen he apy, home
mechanical en ila ion, nonin asi e mechanical en ila ion, home espi a o y he apy, home ea men ,
ch onic espi a o y insu iciency, ch onic espi a o y ailu e, epidemiology, p esc ip ion, quali y con ol,
ou comes, pa ien expe ience, pa ien pe spec i e, ca e s, ca egi e s, pa ien - epo ed expe ience
measu e, ques ionnai es, in e iews, and ocus g oups. The e was no ime es ic ion in he li e a u e
sea ch, al hough i was limi ed o English, Po uguese, o Spanish.
2.1. P esc ip ion Models o HRT
The e a e a numbe o s udies ha ha e assessed he p esc ip ion o HRT. Table 1summa izes 15
ele an s udies on his opic. The majo i y o he s udies (n=9) we e conduc ed om 2009 onwa d
and p ima ily assessed he p esc ip ion o HMV (n=10) [
4
,
5
,
12
–
19
], ollowed by LTOT (n=6) [
19
–
24
].
The es ima ed p e alence o HMV ( om 2.5 o 23/100,000 popula ion) and o LTOT ( om 31.6 o
102/100,000 popula ion) we e a iable among dis inc egions o coun ies. The es ima ed p e alence
o HMV in Eu ope was 6.6 pe 100,000 people, and Po ugal was one o he coun ies wi h he highes
p e alence [5].
Th ee s udies epo ed he assessmen o HRT p esc ip ion a a egional le el (Ca alan, Spain;
Hong Kong, China; Tasmania, Aus alia), eigh a a na ional le el (Sweden, Canada, Poland, Denma k,
England, Aus alia, F ance, Spain), and ou a an in e na ional le el ( wo coun ies, se en coun ies,
13 Eu opean coun ies, 16 Eu opean coun ies).
J. Clin. Med. 2019,8, 555 3 o 24
Table 1. S udies assessing he p esc ip ion o home espi a o y he apies.
Au ho ,
Yea
Region o Coun y,
Yea s Analyzed Aim Me hod Da a Collec ion Resul s
Eks öm e al.,
2017 [20]Sweden, 1987–2015
Long- e m oxygen
he apy (LTOT): incidence,
p e alence, and he
quali y o p esc ip ion
and managemen
Da a om he Swede ox egis y
be ween 1 Janua y 1987 and 31
Decembe 2015
Da a:
Bi h da e,
Sex,
P ima y/seconda y causes o LTOT,
Follow-up,
S op da e and s op cause,
PaO2ai and PaCO2ai ,
PaO2oxygen and PaCO2oxygen,
FEV1and VC,
Wo ld Heal h O ganiza ion pe o mance s a us,
Heigh and weigh ,
Ne e /Pas /Cu en smoke ,
Main enance ea men wi h o al co icos e oids,
Oxygen dose,
Oxygen du a ion.
23,909 pa ien s on LTOT.
48 espi a o y o medicine uni s.
Incidence o LTOT inc eased om 3.9 o
14.7/100,000 inhabi an s o e he s udy ime
pe iod.
In 2015, 2596 pa ien s had ongoing he apeu ic
LTOT in he egis y, a p e alence o 31.6/100,000.
Adhe ence o p esc ip ion ecommenda ions and
ul ilmen o quali y c i e ia we e s able o
imp o ed o e ime.
O pa ien s s a ing LTOT in 2015, 88% had se e e
hypoxemia and 97% had any deg ee o hypoxemia;
98% we e p esc ibed oxygen o ≥15 hou s/day;
76% had bo h s a iona y and mobile oxygen
equipmen ; 75% had a mean PaO2>8.0 kPa
b ea hing oxygen; and 98% we e non-smoke s.
Rose e al.,
2015 [12]Canada, 2012–2013
Home mechanical
en ila ion (HMV):
na ional da a p o iling
Su ey adminis e ed ia a web
link om Augus 2012 o Ap il
2013 o se ice p o ide s
deli e ing ca e/se ices o
en ila o -assis ed indi iduals
equi ing daily nonin asi e
en ila ion (NIV) o in asi e
mechanical en ila ion ia
acheos omy a home.
Su ey con en :
p o ide cha ac e is ics, including se ices and
educa ion p o ided;
use cha ac e is ics (age, en ila ion ype, p ima y
diso de , du a ion o en ila ion);
c i e ia o ini ia ion and moni o ing en ila ion
e ec i eness; equipmen ( en ila o s and
in e aces used, en ila o se icing a angemen s
and backup);
aining and educa ion (audience, s uc u e, opics,
ongoing compe ency assessmen );
liaisons and ansi ions ( e e al, ba ie s o
ansi ion);
ollow-up (s uc u e, equency, loca ion).
Response a e 152/171 (89%).
4334 en ila o -assis ed indi iduals: an es ima ed
p e alence o 12.9/100,000 popula ion.
73% ecei ing NIV and 18% ecei ing in e mi en
manda o y en ila ion (9% no epo ed).
Se ices we e deli e ed by 39 ins i u ional
p o ide s and 113 communi y p o ide s.
Va ious models o en ila o se icing we e
epo ed.
64% o p o ide s s a ed ha ca egi e compe ency
was a p e equisi e o home discha ge, bu
epea ed compe ency assessmen and e aining
we e o e ed by 45%.
Ba ie s o home ansi ion: insu icien unding
o paid ca egi e s, equipmen , and supplies;
a sho age o paid ca egi e s; nego ia ing public
unding a angemen s.
J. Clin. Med. 2019,8, 555 4 o 24
Table 1. Con .
Au ho ,
Yea
Region o Coun y,
Yea s Analyzed Aim Me hod Da a Collec ion Resul s
Esca abill e al.,
2015 [13]
Ca alan Heal h
Se ice (Spain),
2008–2011
HMV: p e alence and
a iabili y in p esc ip ions
Ca alan Heal h Se ice (Ca Salu )
billing da abase, be ween 2008
and 2011.
No epo ed (NR)
240,760 pa ien s ecei ed some ype o HRT
unded by he public sys em.
75.8% used con inuous posi i e ai way p essu e
equipmen , 17.3% used a ious o ms o oxygen
supply, 4.2% used nebulized he apy, 2.5% used
HMV, and 0.2% used miscellaneous ea men s.
6,867 pa ien s ecei ed HMV, 23 use s pe 100,000
popula ion.
Ra es o HMV inc eased by 39% o e he s udy
pe iod
Nasiłowski e al.,
2015 [14]Poland, 2000–2010 HMV: ends o e he las
decade
Ques ionnai e designed
speci ically o he s udy was sen
o he heads o nine HMV cen e s
Su ey Con en :
Cen e de ails: loca ion, a ea o ac i i y
(uni egional/mul i egional), and yea o ini ia ing
HMV.
Numbe o subjec s ea ed wi h HMV in each
consecu i e yea .
O e all numbe o ea ed subjec s, di ided in o
i e disease ca ego ies:
(1) neu omuscula diseases,
(2) lung diseases (ch onic obs uc i e pulmona y
disease (COPD), b onchiec asis, cys ic ib osis,
in e s i ial diseases),
(3) ches -wall diseases (scoliosis, ho acoplas y,
ankylosing spondyli is, pos - ube culosis
sequelae),
(4) hypo en ila ion synd omes (due o obesi y,
cen al congeni al hypo en ila ion synd ome,
cen al sleep apnea),
(5) o he diseases.
Technique o en ila ion (in asi e and
nonin asi e).
Numbe o new cases;
O e all numbe o subjec s ea ed wi h NIV o
acheos omy.
Age o he ea ed subjec s,
Si e whe e en ila ion was ini ia ed: in ensi e ca e
uni , espi a o y depa men , neu ology
depa men , gene al medicine depa men , home,
o o he .
Nine HMV cen e s, 1495 subjec s
Cen e expe ience 9 ±3 yea s (6–13 yea s)
One cen e was dedica ed speci ically o child en,
Two solely ea ed adul s, and o he cen e s
ea ed subjec s i espec i e o age.
In 2010, p e alence o HMV eached almos 2.5
subjec s/100,000.
The majo i y o subjec s on HMV su e ed om
neu omuscula diseases (100% in 2000–2002 o
51% in 2010).
Subjec s wi h a diagnosis o espi a o y ailu e
due o pulmona y condi ions appea ed in 2004,
and he numbe o subjec s apidly inc eased
beginning in 2007. In 2010, hey accoun ed o
almos 25% o all HMV cases.
Hypo en ila ion synd omes we e he hi d main
diagnos ic g oup (4% un il 2008, eaching 11% in
2010).
P opo ion o ches -wall diseases emained ~3%.
In 2000 and 2001, en ila ion ia acheos omy
was exclusi ely used.
The i s subjec s on NIV we e ea ed in 2002. The
numbe o subjec s on NIV was 1/3 in 2004 and
hen le eled o o he ollowing i e yea s,
ollowed by a apid inc ease un il 2010, when he
p opo ions o subjec s ea ed wi h NIV and
acheos omy equalized. Since 2008, he numbe
o new cases ea ed nonin asi ely su passed he
numbe o new cases ea ed wi h in asi e
en ila ion, and in 2010, he o al numbe o
subjec s in bo h g oups was i ually he same.
J. Clin. Med. 2019,8, 555 5 o 24
Table 1. Con .
Au ho ,
Yea
Region o Coun y,
Yea s Analyzed Aim Me hod Da a Collec ion Resul s
Ga ne e al., 2013
[15]
Aus alia and New
Zealand, 2002–2004 HMV
HMV cen e s ha had p esc ibed
HMV o mo e han h ee mon hs
o mo e han i e adul pa ien s.
A designed su ey.
Su ey Con en :
(1) Ins i u ional de ails: loca ion, ype (e.g.,
e ia y), unding (e.g., go e nmen ), pa ien
ca chmen , yea s o se ice;
(2) C i e ia o HMV p esc ip ion by disease g oup
(e.g., COPD);
(3) HMV se ice de ails: numbe o pa ien s
ecei ing HMV, s a ing le els, me hods o
implemen a ion by loca ion/ es s u ilized/s a
in ol ed, me hods o ollow-up by loca ion/ es s
u ilized/s a in ol ed (0–3 g ading om ne e o
always), annual clinic a endances, p esence o an
ou each se ice;
(4) Indi idual pa ien da a (i a ailable): age,
gende , p ima y indica ion o HMV, du a ion o
he apy, adhe ence o he apy, in e ace, machine
se ings (mode, inspi a o y posi i e ai way
p essu e, expi a o y posi i e ai way p essu e,
back-up a e);
(5) Local da abase: cu en da abase o ha cen e ,
da a collec ed, wha da a should be collec ed,
suppo o c ea ion o a na ional da abase, cen e
willing o pa icipa e;
(6) P oblems encoun e ed wi h se ing up an HMV
se ice.
28 cen e s (82%) esponded, p o iding da a on
2725 pa ien s.
P e alence o HMV was 9.9 pa ien s/100,000 in
Aus alia and 12.0 pa ien s/100,000 in New
Zealand.
Va ia ion exis ed among Aus alian s a es ( ange
4–13 pa ien s/100,000) co ela ing wi h popula ion
densi y ( =0.82, p<0.05).
The commones indica ions o ea men we e
obesi y hypo en ila ion synd ome (31%) and
neu omuscula disease (30%).
COPD was an uncommon indica ion (8%).
No consensus on indica ions o commencing
ea men was ound.

J. Clin. Med. 2019,8, 555 6 o 24
Table 1. Con .
Au ho ,
Yea
Region o Coun y,
Yea s Analyzed Aim Me hod Da a Collec ion Resul s
Ringbaek e al.,
2013 [21]
Denma k, 2001–2010
(LTOT: incidence,
p e alence, ea men
modali ies,
and su i al in COPD.
Danish Oxygen Regis e in he
pe iod om 01 Janua y 2001 o 31
Decembe 2010: in o ma ion on
pa ien s on home oxygen he apy,
hei p esc ip ions, and
e mina ion o he apy.
Na ional Heal h Se ices Cen al
Regis e : in o ma ion on
diagnosis o LTOT and on i al
s a us up o 31 Decembe 2011.
NR
On 31 Dec 2001, a o al o 2247 COPD pa ien s
(42.0/100,000) we e ecei ing LTOT.
The numbe o pa ien s on LTOT had inc eased
cons an ly o each a p e alence o 48.1/100,000 in
2010.
Incidence o oxygen he apy inc eased
insigni ican ly om 30.5 o 32.2/100,000.
The majo i y o COPD pa ien s we e women and
olde han 70 yea s o age. The mean age o
pa ien s who s a ed LTOT du ing he s udy
pe iod inc eased om 73.4 ±9 yea s o 74.8 ±9.7
yea s.
Mos o he COPD pa ien s we e p esc ibed
oxygen he apy by a hospi al doc o immedia ely
a e an acu e hospi aliza ion, and he numbe o
p esc ip ions om gene al p ac i ione s was
con inuously declining owa d ze o du ing he
s udy pe iod.
An inc easing numbe o he COPD pa ien s we e
p esc ibed oxygen a leas 15 h daily and had
deli e ed oxygen concen a o and mobile oxygen,
whe eas, in gene al, he oxygen low emained
low (≤1.5 L/minu e).
Compa ed wi h men, women s a ed LTOT mo e
o en in connec ion wi h hospi aliza ion and mo e
o en s opped LTOT wi hin he i s 6 mon hs.
Women we e p esc ibed a lowe oxygen low han
men and he ea men was mo e o en speci ied o
ake place o 15–24 h pe day.
J. Clin. Med. 2019,8, 555 7 o 24
Table 1. Con .
Au ho ,
Yea
Region o Coun y,
Yea s Analyzed Aim Me hod Da a Collec ion Resul s
Mandal e al., 2013
[16]England, NA
HMV: p e alence o sleep
and en ila ion diagnos ic
and ea men se ices
A sho su ey deli e ed by
email o 101 NHS Hospi als
Su ey con en :
10-i em su ey, ocused on diagnos ic se ices and
HMV p o ision:
(a) a ailabili y o diagnos ics,
(b) unding;
(c) pa ien g oups.
76 (68%) esponses ecei ed;
42 (55%) us s epo ed he p o ision o an HMV
se ice.
Only 65% o uni s cha ged o he deli e y o
an HMV se ice, wi h 12% o hese se ices
commissioned by an ex e nal p o ide .
Median se -up equency o he uni s cha ging
was 42 pa ien s pe annum (in e qua ile ange
23–73), whe eas hose uni s ha ailed o cha ge
had a median o 11 (in e qua ile ange 4–22).
O all he HMV se -ups, 67% we e o
obesi y- ela ed espi a o y ailu e and COPD,
wi h he o he es ic i e lung condi ions o ming
he emainde
Se ginson e al.,
2009 [22]
Aus alia, 2004–2005
LTOT: p esc ip ion and
cos s
Da a om all LTOT se ices in
Aus alian Go e nmen ’s
depa men s and heal h se ices
(s a e and ede al)
Cen alized depa men s
managing
s a e budge s o LTOT p o ided
cos s ( o he inancial yea
2004–2005) and pa ien numbe s
(poin p e alence in 2005).
I cen alized da a we e no
a ailable, egional depa men s
adminis e ing LTOT se ices
we e con ac ed.
Da a:
Cos s we e de ined as “equipmen only” ( ees
paid o oxygen companies) o “equipmen and
adminis a i e” (wages and non-labo cos s o
adminis e ing p og ams included).
20,127 pa ien s (100/100,000) h ough 59 di e en
se ices a a cos o o e $31 million.
P esc ip ion a es o LTOT pe 100,000 popula ion
wi hin each s a e anged om 44 o 133, a
h ee old di e ence.
Cos s o LTOT pe pa ien p esc ibed pe yea
unded by indi idual s a es and e i o ies anged
om $1014 o $2574.
The cos o oxygen concen a o s a e aged $85 pe
mon h ( ange, $29–$109), po able oxygen anged
om $16 o $35 pe mon h wi hou e ills, and,
wi h a conse e included, $55 ( wo e ills) o $166
unlimi ed e ills) pe mon h.
All se ices p o ided concen a o s o home use.
Po able oxygen was unded in all s a es, excep
one (whe e i was limi ed o child en and pa ien s
wai ing o hea o lung ansplan s).
J. Clin. Med. 2019,8, 555 8 o 24
Table 1. Con .
Au ho ,
Yea
Region o Coun y,
Yea s Analyzed Aim Me hod Da a Collec ion Resul s
Jones e al., 2007
[23]
Tasmania
(Aus alia),
2002–2004
LTOT
Reco ds o all pa ien s ecei ing
Tasmanian
Go e nmen - unded LTOT
be ween
Decembe 2002 and Ap il 2004
Da a:
Recipien demog aphics,
Indica ions o LTOT,
Oxygen p esc ip ion,
Time o ollow-up.
The se ice p o ide p o ided usage epo s and
cos s.
Ap il 2004: 490 pa ien s ecei ing LTOT
Ra e o 102/100,000;
Median age a p esc ip ion o LTOT was 71.5
( ange 0.7–97.2) yea s, and 54% o pa ien s we e
emale.
Oxygen was p esc ibed o 267 pa ien s (54%)
du ing hospi aliza ion, al hough only 192 o hese
pa ien s (72%) me c i e ia o oxygen use a his
ime.
LTOT was p esc ibed by espi a o y physicians o
248 pa ien s (51%) and by o he hospi al
physicians o mos o he emaining pa ien s
(39%).
Da a on indica ions we e a ailable o 430 pa ien s
(88%), and COPD accoun ed o 48% o
p esc ip ions, bu his p opo ion a ied egionally.
Median ime o eassessmen was 5.5 ( ange,
0.1–116) mon hs, bu a ied be ween egions.
Usage da a we e a ailable o 175 pa ien s (41%)
using oxygen concen a o s in Ap il 2004. O hese
175 pa ien s, 122 (70%) we e p esc ibed oxygen o
COPD. In his g oup, he median use was 18.3
( ange, 0.38–24) hou s pe day; howe e , 36 (30%)
had a median use <15 hou s/day.
J. Clin. Med. 2019,8, 555 9 o 24
Table 1. Con .
Au ho ,
Yea
Region o Coun y,
Yea s Analyzed Aim Me hod Da a Collec ion Resul s
Lloyd-Owen e al.,
2005 [5]
16 Eu opean
coun ies (Aus ia,
Belgium, Denma k,
Finland, F ance,
Ge many, G eece,
I eland, I aly,
Ne he lands,
No way, Poland,
Po ugal, Spain,
Sweden, UK),
2001–2002
HMV: pa e ns o use
ac oss Eu ope
Ques ionnai e o cen e de ails,
HMV use cha ac e is ics and
equipmen choices sen o
selec ed HMV cen e s
Su ey Con en :
Cen e ( ype o ins i u ion and yea o s a ing
HMV),
Numbe o HMV use s on 01 July 2001,
Use s’ cha ac e is ics (sex, age, and ime on HMV).
Use s’ causes o espi a o y ailu e:
(1) Lung: lung and ai way diseases: COPD, cys ic
ib osis, b onchiec asis, pulmona y ib osis, and
pedia ic diseases, including b onchopulmona y
dysplasia;
(2) Tho : ho acic cage abno mali ies: ea ly-onse
kyphoscoliosis, ube culosis sequelae such as
ho acoplas y, obesi y hypo en ila ion synd ome,
and sequelae o lung esec ion;
(3) Neu : neu omuscula diseases: muscula
dys ophy, mo o neu on disease (including
amyo ophic la e al scle osis), pos -polio
kyphoscoliosis, cen al hypo en ila ion, spinal
co d damage, and ph enic ne e pa alysis.
Type o en ila o and in e ace used.
329 cen e s comple ed su eys, 21,526 HMV use s;
Es ima ed p e alence o HMV was 6.6/100,000 in
he 16 Eu opean coun ies.
Di e ences be ween coun ies in he ela i e
p opo ions o (1) lung and neu omuscula
pa ien s using HMV and (2) he use o
acheos omies in lung and neu omuscula HMV
use s.
Lung use s we e linked o an HMV du a ion o <1
yea , ho acic cage use s wi h 6–10 yea s o
en ila ion and neu omuscula use s wi h a
du a ion o ≥6 yea s.
Almos all o he HMV use s had posi i e p essu e
en ila o s, wi h only 0.005% (79 use s) ha ing
o he ypes. Volume p ese posi i e p essu e
en ila o s we e used he leas o lung p oblems
and mos equen ly o neu ological p oblems (%
olume: Lung 15%; Tho 28%; Neu 41%).
O e all, 13% o he su ey popula ion had
en ila ion ia a acheos omy wi h he highes
pe cen age in neu omuscula pa ien s (Neu 24%;
Tho 5%; Lung 8%).
Chu e al., 2004
[17]
Hong Kong (China),
2002 HMV
Su ey o consul an s o
espi a o y
medicine in all adul medical
depa men s o Hong Kong
Hospi al Au ho i y hospi als o
epo
hei adul pa ien s (>18 yea s)
who had e e
been managed by HMV
Su ey con en :
demog aphic da a,
mode o en ila ion (non-in asi e o acheos omy
en ila ion),
unde lying disease,
indica ions o HMV,
ime o s a ing en ila ion,
ime and eason o s opping en ila ion, i any, in
he ollow-up pe iod.
249 cases epo ed o he su ey om 14 cen e s o
adul espi a o y medicine;
156 males (62.7%) and 93 emales (37.3%) wi h a
mean age o 62.7 ±13.8 yea s;
80% o HMV cases we e unde he ca e o six
majo cen e s.
197 cases we e con inuing wi h HMV,
co esponding o ~2.9 HMV use s pe 100,000
popula ion.
The majo i y (n=236, 94.8%) we e ea ed by
nonin asi e en ila ion (NIV), wi h he emaining
13 pa ien s (5.2%) ecei ing acheos omy
en ila ion.
All NIVs we e p o ided by bile el
p essu e-suppo en ila o s. All acheos omized
cases we e pu on HMV a e epea ed ailu es o
wean.
The disease condi ions o which HMV was
p esc ibed: COPD (121, 48.6%); Complica ed
obs uc i e sleep apnea/obesi y hypo en ila ion
synd ome (43, 17.2%); and Res ic i e ho acic
diso de s (85, 34.1%).
J. Clin. Med. 2019,8, 555 16 o 24
Table 2. Con .
Ins umen Popula ion Se ing Language Concep s S uc u e Measu emen
P ope ies
Heal h Se ices
Ou Pa ien Expe ience
(HSOPE): global ou come
measu e o pe cei ed
pa ien -cen e edness o
he ou pa ien heal hca e
pa hway [35]
Tes ed in 1532 adul
ou pa ien s (≥16
yea s) ecei ing ca e
(including
ehabili a ion).
Hospi al I alian
Pe cei ed echnical
e ec i eness o he s a ,
In o ma ion on
modali ies o he
ou pa ien isi , on he
isi ou comes, and he
cou se o he heal hca e
pa hway,
Rela ional aspec s o
ou pa ien –s a
in e ac ion,
In ol emen in decision
making.
10 s a emen s sco ed
using a i e-poin Like
scale om 1 (ne e ) o 5
(always)
1 i em sco ed using a
10-poin scale om 1
( e y dissa is ied) o 10
( e y sa is ied).
Th ee sociodemog aphic
ques ions (sex, age, and
esidence).
One ques ion abou
sugges ions o imp o e
ou pa ien isi s.
Reliabili y
Validi y
In e media e
ca e-IC-PREMs:
Bed-Based
Pa ien -Repo ed
Expe ience Measu e [41]
Tes ed in 1832 adul
pa ien s. Bed-based IC se ices English I alian
Goal Se ing,
Empowe men ,
Sel -Managemen ,
Ca e-Planning,
T ansi ions,
Decision Making,
Communica ion.
15 ques ions sco ed using
wo, h ee, o ou
esponse ca ego ies.
Reliabili y
Validi y
IC-PREMs: home-based
(and eablemen -based)
Pa ien -Repo ed
Expe ience Measu e [41]
Tes ed in 4627 adul
pa ien s.
Home-based o
eablemen IC se ices English I alian
Goal Se ing,
Empowe men ,
Sel -Managemen ,
Ca e-Planning,
T ansi ions,
Decision Making,
Communica ion.
15 ques ions sco ed using
wo, h ee, o ou
esponse ca ego ies.
Reliabili y
Validi y

J. Clin. Med. 2019,8, 555 17 o 24
Table 2. Con .
Ins umen Popula ion Se ing Language Concep s S uc u e Measu emen
P ope ies
IEXPAC, Ins umen o
E alua ion o he
Expe ience o Ch onic
Pa ien s [29]
Tes ed in 356 pa ien s
(≥16 yea s) wi h
ch onic diseases (20%
wi h COPD).
Heal h and social se ices
Spanish
Type and scope o pa ien
and p o essional
in e ac ions o ien ed o
pa ien ac i a ion.
Pa ien ’s
sel -managemen capaci y
o his/he wellbeing
esul ing om he
in e en ions ecei ed.
New ela ional model o
he pa ien wi h he
sys em h ough he
in e ne o wi h pa ne s
in g oup in e en ion.
11 +1 i ems sco ed using
a i e-poin scale om 0
(ne e ) o 10 (always).
Since 2018, a new e sion
wi h 11 +4 i ems is used,
wi h h ee addi ional
i ems.
Reliabili y
Validi y
Li eCou se expe ience
ool [33]
Tes ed in 607 adul
pa ien s wi h
eme gency
depa men and
in-pa ien u iliza ion,
ad anced p ima y
diagnosis o hea
ailu e, cance , o
demen ia.
Home, Nu sing Homes,
Assis ed li ing English
Ca e Team,
Communica ion,
Ca e Goals.
22 i ems sco ed using a
ou -poin scale om 1
(Ne e o S ongly
Disag ee) o 4 (Always o
S ongly Ag ee).
Reliabili y
Validi y
Mul idimensional
Seman ic Pa ien
Expe ience Measu emen
Ques ionnai e [37]
Tes ed in 60 pa ien s
(≥15 yea s)
unde going a
magne ic esonance
scan.
Hospi al English
E alua ion/ alence,
Po ency/con ol,
Ac i i y/a ousal,
No el y.
12 a ing scales using a
se en-poin bipola
a ibu e a ing scales:
‘ex emely’, ‘qui e’,
‘sligh ly’, ‘nei he ’,
‘sligh ly’, ‘qui e’, and
‘ex emely’.
Reliabili y
J. Clin. Med. 2019,8, 555 18 o 24
Table 2. Con .
Ins umen Popula ion Se ing Language Concep s S uc u e Measu emen
P ope ies
PEQ: Pa ien expe ience
ques ionnai e 2001 [39]
Tes ed in 1092
pa ien s (1–91
yea s)/ca e s
P ima y ca e No wegian
Communica ion,
Emo ions,
Sho - e m ou come,
Ba ie s,
Rela ions wi h auxilia y
s a .
To al 18 i ems:
Fou i ems using a
i e-poin scale om 1
(‘no mo e’ o ‘no hing’) o
5 (‘much mo e’ o ‘a lo ’).
10 i ems using a
i e-poin scale om 1
(disag ee comple ely) o 5
(ag ee comple ely).
Fou i ems we e o med
on se en-poin scales.
Reliabili y
Validi y
PEQ: Pa ien Expe iences
Ques ionnai e 2004 [38]
Tes ed in 19578
pa ien s (≥16 yea s)
wi h expe ience wi h
su gical wa ds and
wa ds o in e nal
medicine
Hospi al No wegian
In o ma ion on u u e
complain s,
Nu sing se ices,
Communica ion,
In o ma ion
examina ions,
Con ac wi h nex -o -kin,
Doc o se ices,
Hospi al and equipmen ,
In o ma ion medica ion,
O ganiza ion,
Gene al sa is ac ion.
35 i ems wi h 10-poin
o dinal esponse scales
om 1 (nega i e) o 10
(posi i e).
Reliabili y
Validi y
PACIC: Pa ien
Assessmen o Ch onic
Illness Ca e [34,44]
Tes ed in 4108 adul
pa ien s wi h diabe es,
ch onic pain, hea
ailu e, as hma,
co ona y a e y
disease.
Ch onic ca e
managemen English
Pa ien ac i a ion,
Deli e y sys em design,
Goal se ing,
P oblem sol ing,
Follow-up/coo dina ion.
Focuses on he eceip o
pa ien -cen e ed ca e and
sel -managemen
beha io s.
20 i ems using a
i e-poin scale om 1
(Almos Ne e ) o 5
(Almos Always).
Reliabili y
Validi y
J. Clin. Med. 2019,8, 555 19 o 24
Table 2. Con .
Ins umen Popula ion Se ing Language Concep s S uc u e Measu emen
P ope ies
ACES-SF: Ambula o y
Ca e Expe iences Su ey
[40]
Tes ed in 49,861 adul
pa ien s. P ima y ca e English
Quali y o
physician–pa ien
in e ac ion,
Heal h p omo ion
suppo ,
Ca e coo dina ion,
O ganiza ional access,
O ice s a in e ac ions,
An addi ional i em o
assess pa ien s’
willingness o
ecommend he physician
o amily and iends.
18 i ems using con inuous
esponses: Ne e , Almos
ne e , some imes,
Usually, Almos always,
Always; o Yes, de ini ely,
Yes, somewha , No,
de ini ely no ; o
De ini ely yes, P obably
yes, No su e, P obably
no , De ini ely no .
Reliabili y
Validi y
J. Clin. Med. 2019,8, 555 20 o 24
2.2.2. Indi idual In e iews and Focus G oups
Quali a i e s udies ha explo e he expe ience o pa ien s ecei ing HRT a e s ill limi ed in he
li e a u e. Ne e heless, he li e a u e e iew e ealed some s udies ha explo ed he expe ience o
pa ien s li ing wi h COPD, pulmona y ib osis, and OSA. These s udies speci ically ocused on pa ien s’
needs and he adap a ion p ocess o espi a o y he apies. Two s udies explo ed he pa ien ’s expe ience
wi h LTOT [
45
,
46
], and he o he s assessed he pa ien ’s expe ience wi h non-in asi e en ila ion [
47
–
51
].
These s udies we e conduc ed in he Uni ed S a es o Ame ica [
45
,
47
], New Zealand [
48
,
49
], he Uni ed
Kingdom [
50
], Sweden [
51
], and Spain [
46
] and included bo h adul pa ien s and ca e s. Two e iews
we e also ound on he needs o pa ien s wi h COPD and we e also used in he p esen analysis [
52
,
53
].
F om he analysis o hese s udies, i was possible o clea ly iden i y educa ion, aining, suppo ,
and ca e in ol emen as impo an key-poin s in acili a ing a pa ien ’s ea men expe ience and
subsequen adhe ence. Below, each one o hese ou key-poin s is desc ibed in de ail.
Educa ion: on he basis o he pe spec i es o pa ien s, i is appa en ha educa ion is c ucial o
de ining clea expec a ions abou he ea men and mo i a ing pa ien adhe ence. The main educa ion
opics aised by pa ien s ecei ing espi a o y he apies a e ela ed o disease sel -managemen
(e.g., COPD, OSA); physical e ec s and po en ial clinical bene i s o he espi a o y he apy; isks o
no using he espi a o y he apy; guidance on he use and unc ion o equipmen (e.g., con inuous
posi i e ai way p essu e (CPAP) de ices, oxygen concen a o s, how o use pulse oxime e s and adjus
low wi h exe ion); side e ec s and guidance on i s managemen (skin p o ec ion, d y mou h, nasal
conges ion, i i a ed eyes); a eling wi h equipmen ; ollow-up appoin men s; and assis ance wi h
inancial elemen s (e.g., how o claim elec ici y cos s) [45,46,49,50].
T aining: o mal aining on app op ia e equipmen use has been sugges ed o be an impo an
s a egy o imp o ing adhe ence [
46
–
51
]. Heal hca e p o essionals need o in oduce he de ice, explo e
possible p ac ical p oblems, and gi e ad ice/help o sol e hese p oblems. In hei ini ial expe iences wi h
espi a o y he apy, pa ien s should ha e a hands-on demons a ion o se ing up he de ice, ialing
di e en masks/p essu es, making mask adjus men s, conque ing di e en side-e ec s, and inding he
bes posi ion o he ubing o machine (also conside ing he loudness o he de ice). Regula ollow up
isi s o phone calls a e impo an o assess p ac ical p oblems being expe ienced (e.g., p essu e om
he mask, mask leakage, dis u bing noise, and di icul ies changing sleeping posi ions) and o discuss
e ec i e s a egies o add ess hem.
Suppo : es ablishing a us wo hy ela ionship wi h heal hca e p o essionals a e he ini ia ion o
espi a o y he apy is pe cei ed as help ul by pa ien s, and hese ela ionships posi i ely in luence hei
adhe ence [
46
]. Heal hca e p o essionals need o os e a non-judgmen al en i onmen in which pa ien s
ha e oppo uni ies o ask ques ions, sha e conce ns and eelings, eel lis ened o, and eel unde s ood.
This is pa icula ly impo an ollowing he ini ia ion o he apy [
47
], as ques ions o conce ns a e mo e
likely o a ise du ing he i s days o weeks o ea men [
49
,
52
]. These oppo uni ies can a ise du ing
egula ollow-up isi s, scheduled ollow-up phone calls, and h ough access o a 24-h ho line [47].
Ca e in ol emen : ca e s p o ide subs an ial ca e (emo ional, physical) o he indi idual on
a daily basis and, mos o he ime, li e in he same house as he pa ien . On he basis o hei
impo an ole in pa ien s’ li es, ca e in ol emen has been ound o be essen ial o pa ien s ecei ing
HRT [
45
–
48
,
50
–
53
]. Pa ien s ecognize ha ca e s play a majo ole in hei ea men by helping hem
manage he disease and adap o he equipmen (e.g., e bal eminde s, encou agemen , se ing up he
machine, making mask adjus men s, eassu ance o he apy bene i s). Ca e s hemsel es ecognize hei
need o in o ma ion ega ding aspec s o he disease and bene i s o he HRT [
47
]. Ca e in ol emen
is hus pe cei ed by all s akeholde s as an essen ial componen o educa ion and aining om he
beginning o ea men [
45
,
47
,
48
,
50
–
53
], and i is gene ally associa ed wi h posi i e esul s, namely,
he pa ien s’ adop ion and adhe ence o HRT [47,53].
J. Clin. Med. 2019,8, 555 21 o 24
3. Discussion
This comp ehensi e e iew is a i s c i ical s ep owa d he assessmen o he pa ien expe ience
in he clinical con ex o HRT. I demons a es ha esea ch in his a ea is s ill limi ed, wi h no example
o an HRT p esc ip ion model ha inco po a es he pa ien expe ience as an ou come and wi h no
speci ic PREM a ailable. This e iew also shows ha Eu opean coun ies ha e been in ol ed in HRT
p o ision esea ch om an ea ly s age.
Mos o he esea ch on he assessmen o HRT p esc ip ion models has been conduc ed wi hin
he las decade and mainly in Eu opean coun ies, highligh ing he eme gen in e es and Eu ope’s
leading posi ion in his a ea o heal h esea ch. In addi ion, HMV has a ac ed mo e a en ion om
he scien i ic communi y in compa ison wi h LTOT. Ques ionnai es we e ound o be he p e e ed
me hod o da a collec ion, howe e , exis ing da abases om HRT egis ies o heal h se ices ha e
also been used. Da abases in compa ison wi h ques ionnai es ha e he ad an age o gene a ing mo e
ep esen a i e da a and may be a me hod o choice in u u e s udies. The pa ien expe ience has no
been examined in he assessmen o he p esc ip ion models p esen ed. While his eali y was expec ed
om he oldes s udies, i was qui e a su p ising esul o hose om he las decade. These esul s
show ha , un il now, he assessmen o pa ien s’ pe cep ions has no been seen as a p io i y in he
assessmen o p esc ip ion models. Un o una ely, his is also a eali y in o he heal h con ex s and
se ings [
10
]. The O ganisa ion o Economic Co-ope a ion and De elopmen (OECD) and Eu ope in
“Heal h a a Glance: Eu ope 2018” epo ed c i ical gaps in he da a on pa ien - epo ed expe ience,
and hey ecommended collec ing da a on he pa ien expe ience om any doc o in ambula o y ca e
se ings [
10
]. Thus, u u e s udies on he p o ision o HRT should add ess his impo an gap in
he li e a u e.
To add ess his gap, we need o be awa e o he cu en me hods being used o assess he pa ien
expe ience. Di e en ins umen s used a dis inc le els o heal hca e a e a ailable and desc ibed
in his e iew. These ins umen s we e de eloped o be comple ed by adul pa ien s and, in some
cases, by ca e s o child en. In ou opinion, al hough he ca e s’ pe spec i e is, o cou se, inc edibly
aluable, i should do no eplace he child en’s expe ience. The de elopmen o PREMs o pedia ic
popula ions is c ucial o he collec ion o in o ma ion on he expe ience and ou come o child en’s
ca e. Addi ionally, as p e iously men ioned, none o he ins umen s ha e been speci ically designed
o assess he pa ien ’s expe ience wi h HRT. The de elopmen o a speci ic PREM o his heal h
con ex should be a esea ch p io i y in he upcoming yea s. The mos commonly assessed domains
in he desc ibed ins umen s, including he ERS/ELF su ey, oge he wi h he key acili a o s o he
pa ien ’s ea men expe ience, can be used as impo an sou ces o da a o in o m he de elopmen
o a comp ehensi e ins umen . Access o in o ma ion and suppo , implemen a ion o e ec i e
and clea communica ion, ac i e pa icipa ion in sha ed decision making, enhanced accessibili y and
na igabili y ac oss he heal hca e sys em o pa ien s and amilies, pa icula ly ac oss ansi ional ca e,
and managemen o polypha macy a e known o in luence he pa ien expe ience in o he heal hca e
se ings and could be opics o in e es o be included in u u e PREMs o pa ien s on HRT [
54
]. Fu u e
s udies should explo e which o hese aised opics a e indeed meaning ul o pa ien s and ca e s.
On he basis o quali a i e s udies, i was ound ha educa ion, aining, suppo , and ca e
in ol emen we e impo an key-poin s in acili a ing he pa ien ’s ea men expe ience and adhe ence.
This knowledge comes mainly om he pe spec i e o adul pa ien s wi h COPD, pulmona y ib osis,
and OSA ecei ing CPAP and om hei ca e s. These s udies we e conduc ed in i e coun ies ( h ee
om Eu ope) [
45
–
53
]. Thus, his e idence may no comple ely apply o he expe ience o younge
pa ien s (including child en) and ha o hei ca e s o o pa ien s wi h o he diseases and o he
ea men modali ies (e.g., Bile el Posi i e P essu e Ai way, LTOT) and om o he coun ies/con inen s.
Conside ing hese iden i ied gaps, he expe ience o o he pa ien s ecei ing HRT could be explo ed
in u u e s udies. The iden i ied key-poin s may in o m he de elopmen p ocess o semi-s uc u ed
guides o ocus g oups o indi idual in e iews o be used in hese explo a o y s udies.

J. Clin. Med. 2019,8, 555 22 o 24
4. Conclusions
To he au ho s’ bes knowledge, his is he i s published wo k o e iew he eme ging opic
o he pa ien expe ience in he clinical con ex o HRT and gi e impo an insigh s in o he s a us
o his clinical esea ch a ea while also poin ing ou possible di ec ions in which o mo e o ealize
pa ien -cen e ed ca e. The assessmen o he pa ien expe ience is in i s ea ly s ages, and u he
esea ch is needed o in eg a e hese measu es wi h ou ine heal hca e deli e y and he co e se o
heal hca e quali y indica o s, as well as and o d i e quali y imp o emen s in HRT.
Au ho Con ibu ions:
Concep ualiza ion, C.C., C.J., J.A.F., J.E., and J.C.W.; w i ing—o iginal d a p epa a ion,
C.C. and C.J.; w i ing- e iew and edi ing, S.M.A., J.R.C., J.A.F., J.E., and J.C.W.; p ojec adminis a ion, C.C.,
S.M.A., J.R.C., and J.C.W.
Funding:
C.J. has a pos -doc o al g an (SFRH/BPD/115169/2016) unded by Fundaç
ã
o pa a a Ci
ê
ncia e a Tecnologia
(FCT), co- inanced 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 ).
Con lic s o In e es : The au ho s decla e no con lic o in e es .
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