RESEARCH ARTICLE Open Access
Valida ion and cul u al adap a ion o he
In eg a ed Pallia i e ca e Ou come Scale
(IPOS) o he Po uguese popula ion
Bá ba a An unes
1*
and Ped o Lopes Fe ei a
2,3
Abs ac
Backg ound: To cul u ally adap and alida e he In eg a ed Pallia i e ca e Ou come Scale o Eu opean Po uguese.
Me hods: Mul i-cen ed obse a ional s udy wi h 2 assessmen poin s. Da a we e collec ed in nine cen es using
consecu i e sampling. All pa ien s we e sc eened o eligibili y. Inclusion c i e ia: ≥18 yea s, men ally i o gi e
consen , diagnosed wi h an incu able, po en ially li e- h ea ening illness, ead, w i e and unde s and Po uguese.
T ansla ion and back ansla ion wi h independen na i e speake s blind o he o iginal measu e c ea ed a
Po uguese e sion, which was cul u ally adap ed using cogni i e in e iews. Fo psychome ic es ing, he COSMIN
checklis was ollowed. Reliabili y and con en alidi y we e assessed o pa ien and s a e sions. Cons uc and
c i e ion alidi y we e es ed o pa ien e sion.
Resul s: 1703 indi iduals we e sc eened be ween July 1s 2015 and Feb ua y 2016, 135 (7.9%) we e included. Mean
age was 66.8 yea s (SD 12.7), 58 (43%) we e emale. Mos pa ien s (109; 80.7%) had a cance diagnosis. C onbach’s
alpha showed good in e nal consis ency, 0.657 o pa ien , 0.705 o s a e sions. In aclass co ela ion coe icien
es ing ep oducibili y e ealed e y good eliabili y, 0.794–0.950 o pa ien and 0.456–0.925 o s a e sions. The e
was good con en alidi y and signi ican esul s o cons uc alidi y. Physical symp oms we e be e de ec ed by
emales. IPOS could disc imina e: p ac ical issues in di e en places o ca e, based on cance diagnosis, physical and
emo ional symp oms based on li e expec ancy bo h o pa ien and p o essional dimensions, physical and
emo ional symp oms based on phase o illness, o p o essional dimensions, and physical symp oms om he
pa ien s’ iewpoin .
Conclusions: The Po uguese IPOS is a eliable and alid measu e.
Keywo ds: Pa ien -cen ed ou come measu es, Pallia i e ca e, Ou come measu emen , Pallia i e ca e ou come
scale, Valida ion
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* Co espondence: [email p o ec ed]
1
P ima y Ca e Uni , Depa men o Public Heal h and P ima y Ca e, Uni e si y
o Camb idge, Camb idge, UK
Full lis o au ho in o ma ion is a ailable a he end o he a icle
An unes and Fe ei a BMC Pallia i e Ca e (2020) 19:178
h ps://doi.o g/10.1186/s12904-020-00685-z
Backg ound
The In eg a ed Pallia i e ca e Ou come Scale (IPOS) [1]
is a pa ien -cen ed ou come measu e esul ing om he
me ge o wo p e iously exis ing measu es: he Pallia i e
ca e Ou come Scale and he Pallia i e ca e Ou come
Scale-Symp oms [2]. IPOS was de eloped a he eques
o se e al clinicians wan ing a mo e use - iendly measu e
o clinical p ac ice. Two e sions we e de eloped, one o
be sel - epo ed by pa ien s, and a s a -p oxy- epo ed o
be illed by heal hca e p o essionals, conside ing he
pe cep ions and holis ic assessmen o he symp oms and
o he conce ns he pa ien migh ha e.
The aim o his s udy was wo old: (i) o ansla e,
cul u ally adap and alida e he o iginal English IPOS
in o Po uguese, and (ii) o compa e he esul s ob ained
by he wo e sions o IPOS.
Me hods
Linguis ic and cul u al adap a ion
We ollowed he in e na ionally de ined me hodology o
he linguis ic and cul u al adap a ion o he alida ion
o ou come measu es p oposed by he COnsensus-based
S anda ds o he selec ion o heal h Measu emen IN-
s umen s (COSMIN) checklis [3] and he sequen ial
app oach o he ansla ion [4].
A e seeking and ge ing consen om he au ho s o
he o iginal IPOS measu e, wo independen bilingual
na i e Po uguese speaking ansla o s, one clinical and
one non-clinical, bo h blind o he o iginal English IPOS
o pa ien s, c ea ed wo Po uguese e sions. Nex , wo
o he na i e Po uguese speaking independen e iewe s
no blind o he o iginal IPOS de eloped a consensus
Po uguese e sion. This was hen sen o wo o he in-
dependen na i e English-speaking ansla o s, also blind
o he o iginal English IPOS, who back ansla ed i in o
English. Compa ing his back ansla ed e sion wi h he
o iginal one, he same e iewe s de eloped a second
Po uguese consensus e sion.
Then, h ee clinical e isions we e pe o med by one
specialis pallia i e ca e doc o , one specialis pallia i e
ca e nu se and one non-clinical esea che in pallia i e
ca e –all na i e Po uguese. These expe s we e asked
o look a bo h e sions and commen o each ques ion.
Th ee possible ou comes migh a ise: (1) ques ion was
co ec ly w i en and no change was p oposed, (2) ques-
ion was inco ec ly ph ased and an al e na i e ques ion
was p oposed; o (3) ques ion was co ec ly w i en bu
an al e na i e would be e . Based on he pa ien e sion,
a inal clinical e iew o he s a e sion o IPOS was
also pe o med by he same expe s.
Nex , cogni i e in e iews we e pe o med wi h 12 pal-
lia i e ca e pa ien s and nine heal hca e p o essionals.
Each pa ien had an indi idual in e iew and p o essionals
we e in e iewed in wo g oups. The pu pose o hese
in e iews was o check accep abili y by pa ien s and s a ,
wi hou ambigui y and edundancy and lack o impo an
i ems. A inal Po uguese e sion was ob ained [5].
S udy design
This was a mul i-cen ed obse a ional s udy wi h wo
assessmen poin s. Da a we e collec ed in nine cen es
using consecu i e sampling. All pa ien s a ending he
pa icipan se ices we e sc eened o eligibili y. Inclu-
sion c i e ia we e o be 18 yea s o olde , men ally i o
gi e consen , diagnosed wi h an incu able, po en ially
li e- h ea ening illness, ead, w i e and unde s and
Po uguese. Exclusion c i e ia included pa ien s in
dis ess o cogni i ely impai ed. All p o essionals who
p o ided ca e o pa icipan pa ien s we e eligible o
his s udy. They illed he s a p oxy IPOS independ-
en ly om he co esponding pa ien s.
A s anda d ope a ing p ocedu es manual was p e i-
ously de eloped and dis ibu ed o all cen es in he pe -
son o he acili a o /champion leading he s udy locally.
A e checking da a quali y, Li le’s MCAR es was
implemen ed o e i y i da a we e missing a andom.
We adop ed he ollowing c i e ia: a es < 1% a e i ial,
1–5% a e manageable, 5–15% equi e sophis ica ed
s a is ical me hods o handle, and > 15% may se e ely
impac any o m o in e p e a ion [6].
E hical app o als we e g an ed in acco dance wi h he
1964 Helsinki decla a ion and i s la e amendmen s o
compa able e hical S anda d be he ollowing E hics
Commi ees: S. João Hospi al (no e e ence numbe ),
Regional Heal h Au ho i ies o Cen o ( e e ence 77/
2015) and o Lisbon and Tagus Valley ( e e ence 6801/
CES/2015), Vila No a de Gaia/Espinho Hospi al Cen e
( e e ence 275/2015), Lisbon Cance Ins i u e ( e e ence
UIC/967 n° 89/2015), S. João de Deus Ins i u e ( e e -
ence CEISJD03_15); Lisbon Medicine Academic Cen e
( e e ence 51/15), and No des e Heal h Local Uni (no
e e ence numbe ). In o med w i en (signed) consen
was ob ained om all pa icipan s (pa ien s and heal h-
ca e p o essionals). SPSS 22 so wa e was used.
Measu es used
IPOS [1], he measu e unde s udy, is a b ie , 19-i em,
mul idimensional scale designed o cap u e co e con-
ce ns in pallia i e ca e. I em 1 is an open ques ion e-
ga ding he h ee main p oblems o wo ies he pa ien /
p o essional had in he pas week; i ems 2 o 9 a e se on
5-poin Like scales based on desc ip o s, i em 2 lis s
en o he mos common physical symp oms in a pallia-
i e popula ion, wi h he possibili y o an addi ional
h ee symp oms (no p esen in he lis ); i em 3 is abou
anxie y, i em 4 pe ains o amily/ iends wo ies, i em 5
asks abou dep ession; i em 6 is eeling a peace; i em 7
add esses sha ing eelings wi h signi ican people; i em 8
An unes and Fe ei a BMC Pallia i e Ca e (2020) 19:178 Page 2 o 11
is abou in o ma ion needs and i em 9 conce ns p ac ical
p oblems ela ed o hei illness. In he pa ien e sion,
he e is an ex a i em asking i hey had illed he ques-
ionnai e alone o wi h help. A he e y end, he e is a
igge in he o m o a oo no e no ing ha i he
pa ien became wo ied abou any o he issues aised by
he ques ionnai e, hey should/a e ad ised o alk o
hei heal hca e p o essional abou hose wo ies.
Each o he en physical symp oms and all he ollow-
ing ou emo ional symp oms we e linea ly con e ed
in o a 0–100 scale, in which highe sco es co esponded
o highe se e i y symp oms. Addi ionally, i ems 7 o 9
we e con e ed o a 0–100 scale ep esen ing he unc-
ionali y associa ed o each ques ion. An a e age o
each symp om and unc ionali y i em was acco dingly
compu ed.
The Po uguese Eu oQol ques ionnai e (EQ-5D-3L)
[7] allows quan i ying wo main componen s o heal h
ela ed quali y o li e: a i s desc ip ion o heal h s a us
in he o m o i e dimensions o domains and a nu-
me ic alue associa ed wi h he pe cei ed global heal h
s a us by he indi idual. These componen s a e used in
cos -u ili y economic e alua ions, a e ans o ming he
desc ip i e sys em in o a unique u ili y sco e. The e a e
i e i ems se in a 3-poin Like scale wi h desc ip o s.
The i ems pe ain o mobili y, sel -ca e, usual ac i i ies,
pain/discom o and anxie y/dep ession. I also has a nu-
me ic analogue isual scale (EQ-VAS) om 0 ( he wo s
possible heal h s a e) o 100 ( he bes possible heal h
s a e) so ha he esponden can quan i y hei heal h
s a e in he momen when illing he ques ionnai e. The
au ho s o he Po uguese e sion s a e ha his measu e
has good accessibili y, eliabili y and alidi y in measu -
ing heal h [7,8]. The ob ained u ili y sco e anges om
0 (dea h) o 1 (pe ec heal h), allowing o nega i e
alues co esponding o heal h s a e pe cei ed as wo se
han dea h.
ThePo uguese ansla iono heEu opeanO ganiza ion
o Resea ch and T ea men o Cance Quali y o Li e
Ques ionnai e Co e (EORTC QLQ-C30) [9,10]isa30-
i em ques ionnai e, 24 i ems compose nine mul i-i em
scales, namely, i e unc ional subscales (physical, ole, cog-
ni i e, emo ional, and social); a global heal h/QoL subscale
and h ee symp om subscales ( a igue, pain, and nausea/
omi ing). The emaining six i ems a e single-i em asses-
sing symp oms commonly epo ed by cance pa ien s (dys-
pnoea, appe i e loss, sleep dis u bance, cons ipa ion, and
dia hoea) and one emaining i em ela ed o he pe cei ed
inancial impac o cance . All i ems a e sco ed on 4-poin
Like scale anging om 1 (no a all) o 4 ( e y much),
apa om wo i ems o he global heal h/QoL subscale,
which use a modi ied 7-ancho linea analogue scale. All
scales ange om 0 o 100. A high sco e o unc ional
scales and global heal h s a us/QoL ep esen s a heal hy
le el o unc ioning and QoL. Fo each subscale, a sco e be-
ween 0 and 7 is conside ed no mal, be ween 8 and 10
mild, be ween 11 and 14 mode a e and be ween 15 and 21
se e e. The au ho s conclude ha he Po uguese EORTC
QLQ C-30 has good me ic p ope ies.
The Po uguese Hospi al Anxie y and Dep ession
Scale (HADS) [11] sc eens o anxie y and dep ession
s a es and has 14 i ems di ided in o wo subscales.
These a e based on a 4-poin Like scale, wi h desc ip-
i e answe s, comp ised o se en i ems each, sco ed
sepa a ely. The au ho s p opose a clinical cu -o o 11
o dep ession and anxie y. The au ho s conclude ha
he Po uguese HADS is eliable and alid o assess
dep ession and anxie y in di e en medical se ings and
disease popula ions.
‘Phase o illness’is a concep ualiza ion o a pa ien ’s
illness in i e dis inc , clinically meaning ul phases—
s able, uns able, de e io a ing, e minal, be ea emen
( his las omi ed in he p esen s udy) - de eloped in
con ex o he Aus alian Case Mix Classi ica ion. I can
be used as an indica o o acui y and e lec s complexi y
wi hin he disease ajec o y [12,13].
Demog aphic and clinical a iables we e also collec ed.
The con en in he open ques ions 1a, 1b and 1c was ag-
g ega ed o de ine he mos p e alen wo ies occu ing
in he p e ious week o comple ion.
Reliabili y
Reliabili y was add essed by he in e empo al s abili y
and he in e nal consis ency. The in e empo al s abili y
was es ed in inpa ien s and ou pa ien s wi h a gua an ee
o no clinical change, by in aclass co ela ion coe icien
(ICC), on a e age, in a 1-week es - e es design. A sco e
smalle ha 0.5 is conside ed weak, be ween 0.5 and
0.75 mode a e, be ween 0.75 and 0.9 good, and la ge
han 0.9 excellen [14]. The in e - a e eliabili y be-
ween s a membe s was also assessed.
In e nal consis ency was es ed by he C onbach’s
alpha coe icien , which should ha e sco es be ween 0.7
and 0.9 [15]. Howe e , ollowing au ho ’s ad ice [1], we
also lowe ed he lowe limi 0.6 due o he mul i-
dimensionali y and non- edundancy o IPOS [16].
The ollowing wo hypo heses we e o mula ed:
H
1
: The Po uguese e sion o he IPOS shows good
in e empo al s abili y.
H
2
: The Po uguese e sion o he IPOS shows good
in e nal consis ency.
Validi y
Validi y was add essed by he con en , cons uc , and c i e -
ion alidi y [15,16]. The o me has been es ed h ough
he clinical e iews and he cogni i e deb ie ing in e iews.
Cons uc alidi y was es ed by hypo heses wi h
known g oups s a i ied by sociodemog aphic a iables
An unes and Fe ei a BMC Pallia i e Ca e (2020) 19:178 Page 3 o 11
(age, gende , and educa ion le el) and some clinical a i-
ables (place o ca e, ype o disease, li e expec ancy and
phase o illness).
The ollowing hypo heses we e aised:
H
3
: IPOS can disc imina e based on he
sociodemog aphic a iable age.
H
4
: IPOS can disc imina e based on he
sociodemog aphic a iable gende .
H
5
: IPOS can disc imina e based on he
sociodemog aphic a iable educa ion le el.
H
6
: IPOS can disc imina e based on he
clinical a iable place o ca e.
H
7
: IPOS can disc imina e based on he clinical
a iable ype o disease.
H
8
: IPOS can disc imina e based on he clinical
a iable li e expec ancy.
H
9
: IPOS can disc imina e based on he clinical
a iable phase o illness.
Age and gende we e no expec ed o in luence IPOS
sco es. Less educa ed pa ien s migh ha e mo e symp-
oms wi h g ea e impac on quali y o li e. Same
phenomenon was expec ed o uns able pa ien s.
No mali y es s we e i s pe o med. Two-sample inde-
penden - es s we e applied when no mali y assumed; i
no , chi-squa ed and Mann-Whi ney U es s we e used.
P alues below 0.05 a e conside ed s a is ically signi ican .
To es he c i e ion alidi y, we used bi a ia e s a is-
ical analyses (Pea son’s co ela ion coe icien s) be-
ween he dimensions o he Po uguese e sion o he
IPOS and o he measu ing ins umen s, namely EQ-5D-
3L (index and VAS), EORTC QLQ-C30 ( unc ional index,
symp om scale, and quali y o li e) and HADS (anxie y
and dep ession) i ems. We hypo hesised ha i ems meas-
u ing simila cons uc s would ha e highe co ela ions
and i ems measu ing di e en cons uc s would ha e a
lowe co ela ion. Co ela ions less han 0.3, be ween 0.3
and 0.5, and highe han 0.5 we e de ined as weak, mode -
a e and s ong, espec i ely [17].
The ollowing h ee hypo heses we e o mula ed:
H
10
: IPOS dimensions a e co ela ed wi h simila
EQ-5D-3L dimensions.
H
11
: IPOS dimensions a e co ela ed wi h simila
EORTC QLQ-C30 dimensions.
H
12
: IPOS dimensions a e co ela ed wi h simila
HADS dimensions.
We expec con e gence be ween simila dimensions
and di e gence o dis inc dimensions’sco es.
Resul s
Linguis ic and cul u al adap a ion
The e we e g amma ical and con en di e ences in he
i s ansla ion s age, ega ding i ems/ques ions ph as-
ing as well as he esponse ca ego ies. The e we e di e -
ences in he backwa d ansla ion, namely e b enses
and he use o synonyms, a he han he di ec ansla-
ion o wo ds. Bo h issues we e esol ed by discussion
wi h bo h e iewe s.
The clinical e isions lagged di e ences in e b enses
in h ee i ems which we e discussed, and changes we e
made o c ea e he inal e sion. In ela ion o he cogni-
i e in e iews o de e mine con en ( ace) alidi y, hese
we e conduc ed in wo pallia i e ca e se ices in wo
majo hospi als in he No h o Po ugal. Twel e pa ien s
we e indi idually in e iewed, and nine heal hca e p o es-
sionals we e in e iewed in wo g oups. See Supplemen al
Ma e ial Table 1 o demog aphics, ime o comple ion
and opinions on he IPOS om all esponden s.
Main changes o inalise he Po uguese IPOS we e: (i)
o emo e nume als indica i e o he sco es in he di e -
en i ems in each esponse squa e; (ii) o al e he ques-
ionnai e ins uc ions o he heal hca e p o essional o
cla i y ha he las esponse op ion should be used o
“no applicable”as well as “unknown”; (iii) o al e he
ins uc ions in he pa ien ques ionnai e o a oid epe i-
ion o eques ing he esponden o choose he bes an-
swe and ma k i wi h an “x”in he co esponding
squa e; (i ) o add space be ween he g oups o i ems in
page 2 as well as add he ime pe iod o which he i ems
pe ain o, namely, “Du ing he las week”.
Da a collec ion
Da a we e missing a andom (Li le’s MCAR es
showed Chi-Squa e = 2452.9; p= 0.213). Missing da a
a ied be ween 1 and 5%, as expec ed in pallia i e popula-
ions, mos ques ionnai e i ems p esen ed a non-pa ame ic
dis ibu ion, so he impu a ion o he median was used o
handle missing da a.
Demog aphic and clinical da a
1703 indi iduals we e sc eened in nine cen es o main-
land Po ugal be ween July 1s 2015 and 20 h Feb ua y
2016. Among hem, 1410 (82.8%) we e immedia ely
conside ed non eligible, mainly because hey we e no
en olled in pallia i e ca e, we e less han 18 yea s o age,
o could no ead, w i e o unde s and Po uguese. We
excluded 140 (8.2%) mo e indi iduals mainly because
hey we e excessi ely su e ing, o hey we e cogni i ely
de e io a ed. The e we e 18 (1.1%) eligible pa ien s who
declined pa icipa ion.
A o al o 135 (7.9%) pa ien s we e included and illed
he ques ionnai es wi hou help, mos (98; 72.6%) we e
app oached o pa icipa e in he s udy whils in ou -
pa ien consul a ions. Table 1p esen s demog aphic and
clinical in o ma ion o esponden pa ien s.
Mos pa ien s we e olde male wi h low li e acy,
mainly diagnosed wi h cance , ecei ing specialized
pallia i e ca e, and in a s able phase o hei illness.
Howe e , hei mean quali y o li e index was low, hey
An unes and Fe ei a BMC Pallia i e Ca e (2020) 19:178 Page 4 o 11
Table 1 Demog aphic and clinical in o ma ion o pa icipa ing pa ien s
Pa ien s
Va iable Value N %
Gende Male 77 57.0
Female 58 43.0
Age (yea s) < 65 57 42.2
65+ 78 57.8
Min –Max 29–94
Mean ± s anda d de ia ion 66.8 ± 12.7
Educa ion Reads and w i es 5 3.7
4 yea s 81 60.0
6 yea s 20 14.8
9 yea s 10 7.4
10 yea s o college 19 14.0
Geog aphical Region No h 74 54.8
Cen e 25 18.5
Sou h 36 26.7
A ea U ban 94 69.6
Pe i-u ban 31 23.0
Ru al 10 7.4
Place o ca e P ima y ca e 28 20.7
Hospi al 25 18.5
Pallia i e ca e 82 60.7
Cance diagnosis Yes 109 80.7
No 26 19.3
Li e expec ancy Less han 6 mon hs 48 35.6
Be ween 6 mon hs and 1 yea 47 34.8
Mo e han 1 yea 40 29.6
Phase o illness S able 64 47.4
Uns able 28 20.7
De e io a ing 43 31.9
Quali y o Li e Mean Index 31.4
Mean VAS 53.7
Anxie y (HADS) No mal (0–7) 11 8.1
Mild (8–10) 16 11.9
Mode a e (11–14) 66 48.9
Se e e (15–21) 42 31.1
Mean ± s anda d de ia ion 12.7 ± 3.1
Dep ession (HADS) No mal (0–7) 17 12.6
Mild (8–10) 63 46.7
Mode a e (11–14) 48 35.6
Se e e (15–21) 7 5.2
Mean ± s anda d de ia ion 10.1 ± 2.6
EORTC Quali y o Li e 49.7 ± 20.6
EORTC Func ional scales Physical unc ioning 48.4 ± 28.7
Role unc ioning 51.5 ± 34.7
An unes and Fe ei a BMC Pallia i e Ca e (2020) 19:178 Page 5 o 11

showed high sco es o anxie y and low physical and
emo ional unc ioning sco es. Thei main epo ed
symp oms we e a igue and pain.
In Table 2we p esen he mean sco es o each IPOS
i em when illed by pa ien s and assigned by heal hca e
p o essionals. By compa ing, o each pa ien , his/he
sco e and he one p o ided by he heal hca e p o essional,
we also p esen he esul s om he pai ed samples - es .
Emo ional symp oms a e mo e p e alen , especially
hose measu ing amily and pa ien anxie y, and dep es-
sion. Rega ding physical symp oms, he p esence o
weakness o lack o ene gy, pain, and poo mobili y we e
he mos p e alen . Vomi ing, nausea and sho ness o
b ea h a e he symp oms less p esen in hese pa ien s.
Compa ing pa ien s and p o essionals sco es, we no e
lowe sco es among p o essionals ega ding physical
Table 1 Demog aphic and clinical in o ma ion o pa icipa ing pa ien s (Con inued)
Pa ien s
Va iable Value N %
Emo ional unc ioning 62.5 ± 24.2
Cogni i e unc ioning 75.4 ± 23.2
Social unc ioning 66.9 ± 30.9
EORTC Symp om scales Fa igue 49.0 ± 25.4
Nausea and omi ing 8.1 ± 16.5
Pain 35.1 ± 29.1
Dyspnoea 14.1 ± 26.5
Insomnia 32.6 ± 34.4
Appe i e loss 30.9 ± 36.6
Cons ipa ion 24.9 ± 31.7
Dia hoea 9.1 ± 20.9
Financial impac 32.6 ± 35.8
Table 2 Desc ip i e s a is ics o IPOS i ems (%) - n= 134
Pa ien s S a | | (Sig.)
Physical symp oms Pain 42.0 35.9 1.914 (p= 0.058)
Sho ness o b ea h 15.0 14.8 0.118 (p= 0.906)
Lack o ene gy 42.1 45.6 1.598 (p= 0.112)
Nausea 12.6 11.3 0.733 (p= 0.465)
Feeling sick 8.7 6.4 1.801 (p= 0.074)
Poo appe i e 34.5 30.4 1.374 (p= 0.172)
Cons ipa ed 28.2 19.0 3.923 (p< 0.001)
Wounds in mou h o mou h d y 31.4 10.6 7.450 (p < 0.001)
Sleepiness 33.1 14.7 7.493 (p> 0.001)
Lack o mobili y 39.2 41.4 1.029 (p= 0.305)
To al subscale sco e 28.7 23.3 5.233 (p < 0.001)
Emo ional symp oms Anxie y 56.9 54.5 0.921 (p= 0.359)
Family/ iends wo y 70.3 62.4 2.693 (p= 0.008)
Dep ession 47.3 42.0 2.103 (p= 0.037)
Feeling a peace 35.8 45.0 3.151 (p= 0.002)
To al subscale sco e 52.7 50.7 1.206 (p= 0.230)
Communica ions/
p ac ical issues
Sha ing eelings 62.9 48.6 4.285 (p < 0.001)
In o needs 83.6 80.9 0.939 (p= 0.349)
P ac ical p oblems 76.5 68.8 2.487 (p= 0.015)
To al subscale sco e 73.9 65.4 4.217 (p < 0.001)
P alues below 0.05, conside ed s a is ically signi ican , a e in bold le e s
An unes and Fe ei a BMC Pallia i e Ca e (2020) 19:178 Page 6 o 11
symp oms as cons ipa ion, wounds in mou h o mou h
d y, and ouble in sleep, as well as he emo ional symp-
oms, being wo ied abou amily and iends, dep essed, o
eeling a peace. How pa ien s’p ac ical p oblems ha e
been sol ed is also sco ed lowe by heal hca e
p o essionals.
The inpu om he open ques ion abou he main con-
ce ns pa ien s epo ed and hose obse ed and epo ed
by p o essionals a e p esen ed in Supplemen al Ma e ial
Table 2. Comple ion a es o all 3 i ems was highe in p o-
essionals han in pa ien s. Rega ding a e o comple eness
o each o he i ems, 1a had he highes (71% o pa ien s
and 92% o p o essionals), i em 1b ollowed (36% o pa-
ien s and 64% o p o essionals) and inally, i em 1c was
he leas esponded o wi h 17% o pa ien s comple ing i
and 30% o p o essionals comple ing i . F om he pa ien
pe spec i e, pa ien s a e mo e conce ned wi h he disease
i sel and wi h hei heal h s a us. Pain also occupies a
ele an posi ion, as does he conce n abou he impac o
hei heal h s a us in hei amily membe s. The conce ns
abou hei ac ual dependence, abou hei u u e and
abou dea h a e also ele an o pa ien s. Rega ding he
pe spec i e o heal hca e p o essionals, hey much mo e
ecognise pa ien s’conce ns abou he u u e, as well as
abou hei disease and heal h s a us, and abou ea -
men s hey will be submi ed o.
Reliabili y
Table 3shows he es - e es eliabili y sco es o bo h
pa ien and p o essionals’ e sions, as well as he in e nal
consis ency o he h ee main dimensions and he global
sco e o IPOS.
IPOS i ems showed good es - e es eliabili y (H
1
),
wi h ICC om 0.794 ( eeling sick) o 0.950 (poo appe-
i e) o pa ien s, and om 0.456 ( amily/ iends wo y)
o 0.925 (sho ness o b ea h) o p o essionals.
The C onbach’sαmeasu ing he in e nal consis ency
is, in gene al, mode a e o high (H
2
) wi h sco es o 0.657
o pa ien s and 0.705 o heal hca e p o essionals. All
dimensions had also accep able in e nal consis ency, ex-
cep o he dimension ‘communica ion/p ac ical issues’
o pa ien s ha showed a e y weak sco e.
Validi y
Ha ing he con en alidi y assu ed by he in e iews
wi h expe s (pa ien s and p o essionals) du ing he cul-
u al adap a ion o bo h e sions, we s a ed by es ing
cons uc alidi y. We used some sociodemog aphic and
clinical a iables and s udied he beha iou o he
Table 3 IPOS eliabili y o pa ien s and p o essionals
Pa ien s S a
ICC Alpha ICC Alpha
Physical symp oms 0.725 0.660
Pain 0.884 0.862
Sho ness o b ea h 0.810 0.925
Lack o ene gy 0.851 0.713
Nausea 0.812 0.759
Feeling sick 0.794 0.644
Poo appe i e 0.950 0.821
Cons ipa ed 0.938 0.706
Wounds in mou h o mou h d y 0.895 0.696
Sleepiness 0.882 0.632
Lack o mobili y 0.887 0.852
Emo ional symp oms 0.615 0.658
Anxie y 0.909 0.525
Family/ iends wo y 0.871 0.456
Dep ession 0.899 0.625
Feeling a peace 0.894 0.453
Communica ions/
p ac ical issues
0.223 0.617
Sha ing eelings 0.810 0.514
In o needs 0.860 0.720
P ac ical p oblems 0.938 0.598
All dimensions All i ems 0.657 0.705
An unes and Fe ei a BMC Pallia i e Ca e (2020) 19:178 Page 7 o 11
Table 4 Cons uc alidi y o pa ien and p o essionals looking a physical, emo ional and p ac ical issues dimensions
Va iable Value IPOS Pa ien Dimensions IPOS P o essional Dimensions
Physical
symp oms
Emo ional symp oms P ac ical Issues Physical
symp oms
Emo ional symp oms P ac ical Issues
Mean Sig Mean Sig Mean Sig Mean Sig Mean Sig Mean Sig
Age < 65 yo
≥65 yo
28.8
28.6
0.947 51.8
53.4
0.651 74.0
73.8
0.963 21.6
24.5
0.177 49.8
51.3
0.651 63.8
66.5
0.456
Gende Male
Female
26.6
31.6
0.040 50.4
55.7
0.127 71.6
76.7
0.104 22.3
24.5
0.320 50.2
51.3
0.748 63.0
68.5
0.127
Educa ion ≤4 yea s
> 4 yea s
28.8
28.5
0.903 52.8
52.5
0.918 75.2
71.6
0.279 24.3
21.3
0.173 50.7
50.6
0.984 64.9
66.2
0.722
Place o ca e P ima y ca e
Hospi al
Pallia i e ca e
25.7
23.9
31.2
0.038 50.4
47.0
55.2
0.155 66.7
82.3
73.8
0.008 21.1
18.9
25.4
0.042 56.1
47.7
49.7
0.181 56.4
68.3
67.4
0.029
Cance diagnosis Yes
No
28.7
28.6
0.979 53.2
50.5
0.528 75.5
67.0
0.034 23.4
22.8
0.841 49.7
54.9
0.186 67.5
56.4
0.012
Li e expec ancy < 6 mo
6mo–1y
>1y
35.4
25.6
24.4
< 0.001 59.0
49.5
48.9
0.021 73.6
76.6
71.0
0.377 30.3
20.9
17.6
< 0.001 56.3
46.8
48.4
0.022 63.7
69.1
63.0
0.306
Phase o illness S able
Uns able
De e io a ing
25.3
27.8
34.5
0.004 49.1
54.2
57.0
0.117 75.8
73.2
71.5
0.495 19.3
23.4
29.1
< 0.001 44.4
53.2
58.4
< 0.001 68.8
60.9
65.4
0–140
An unes and Fe ei a BMC Pallia i e Ca e (2020) 19:178 Page 8 o 11
di e en IPOS dimensions o di e en le els o hose
a iables, ega ding he pa ien e sion, o which he
mean sco es a e p esen ed in Table 4.
O he h ee sociodemog aphic a iables s udied,
IPOS could only disc imina e emo ional symp oms
based on gende (H
3
). Females showed mo e physical
symp oms han male pa ien s did. Rega ding clinical
a iables, communica ion and p ac ical issues ha e di -
e en signi ican sco es ega ding he a ious places o
ca e(H
6
), meaning ha highe sco es co espond o in-
pa ien s and lowe sco es o p ima y ca e. IPOS could
disc imina e p ac ical issues, based on cance diagnos-
is(H
7
), physical and emo ional symp oms based on li e
expec ancy(H
8
) bo h o pa ien and p o essional di-
mensions. IPOS could disc imina e physical and emo-
ional symp oms based on phase o illness(H
9
), o
p o essional dimensions, and physical symp oms om
pa ien s’ iewpoin . In summa y, cance pa ien s
showed mo e easiness in sol ing p ac ical issues, pa-
ien s wi h less han 6 mon hs o li e expec ancy e-
po ed highe physical and emo ional symp oms and
we e equally pe cei ed as such by s a , and hese we e
able o be e ecognise physical and emo ional symp-
oms among hose pa ien s who we e in a mo e de e i-
o a ing phase o hei illness.
Rega ding c i e ion alidi y, Table 5shows he e
we e good co ela ions be ween EQ-5D-3L index and
IPOS physical and emo ional symp oms and a good
co ela ion be ween EQ-VAS and all IPOS dimen-
sions. This measu e co ela es poo ly wi h p ac ical
issues (H
10
).
In ela ion o he EORTC (H
11
) he unc ional index
showed signi ican co ela ions wi h bo h IPOS physical
and emo ional symp oms, he symp oms scale co ela ed
s onge wi h physical and emo ional symp oms and
mode a ely wi h p ac ical issues, and he quali y o li e
measu e co ela ed signi ican ly wi h physical symp oms
and wi h emo ional symp oms.
Finally, he HADS (H
12
) co ela ed poo ly wi h phys-
ical symp oms and signi ican ly wi h emo ional symp-
oms. The anxie y indica o also co ela ed signi ican ly
wi h IPOS p ac ical issues.
Discussion
The Po uguese IPOS is a eliable and alid measu e, ap-
p op ia e o use wi h pa ien s wi h ad anced, incu able
illnesses. Rega ding he ansla ion p ocess and cul u al
adap a ion he e we e, as expec ed, adjus men s made o
he di ec ansla ion o some concep s and in he o e -
all appea ance o he measu e. These changes a e well
aligned wi h he li e a u e, mainly wi h he F ench [18]
and Swedish [19] ansla ions and cul u al adap ions o
his measu e. Rega ding he open ques ion i ems 1a, 1b
and 1c, hese ga e insigh s o some o he issues wo y-
ing pa ien s, which was impo an and in o ma i e o
heal hca e p o essionals o ac upon in eal ime. This
i em could also p o ide a good s a e o he clinical
appoin men .
Rega ding psychome ic p ope ies, he e was good
ag eemen be ween pa ien and p o essional a ings, es-
pecially in mos physical symp oms. I is expec ed ha
some p oxy a ings a e lowe o p o essionals and
highe when done by p oxy amily a ings and indeed,
he e we e lowe p oxy a ings o some i ems. This
measu e also disc imina es well be ween li e expec ancy
(su p ise ques ion) and phase o illness. IPOS is compa -
able wi h o he measu es in he ield, as i showed
mode a e co ela ions wi h he EORTC-QLQ-C30, he
HADS and he EQ-5D-3L.
These esul s show commonali ies wi h alidi y o he
o iginal English and Ge man IPOS e sions [1] and he
Japanese e sion [20]. Indeed, he o iginal measu es
showed simila esul s o mos psychome ic p ope ies
and i is no ed ha he mode a e co ela ions a e
expec ed gi en ha IPOS measu es how a pe son is
a ec ed by hei symp oms a he han he se e i y o
symp oms.
S eng hs and limi a ions
This was a mul icen e s udy in di e en egions o he
coun y and in di e en se ings wi hin all h ee sec o s
o he Po uguese heal hca e sys em, hus secu ing good
he e ogenei y o ou sample. As expec ed, in he specia-
lised pallia i e ca e se ices, we obse ed a highe num-
be o pa ien s wi h a li e expec ancy unde 6 mon hs, 42
Table 5 C i e ion alidi y (Co ela ions)
Measu e Indica o Physical
symp oms
Emo ional symp oms P ac ical Issues
EQ-5D-3L Index −0.529 (p < 0.001) −0.395 (p < 0.001) 0.028 (p= 0.748)
EQ-VAS −0.309 (p< 0.001) −0.356 (p< 0.001) 0.221 (p= 0.010)
EORTC Func ional index −0.532 (p< 0.001) −0.500 (p< 0.001) 0.156 (p= 0.071)
Symp oms scale 0.659 (p < 0.001) 0.371 (p < 0.001) −0.220 (p = 0.010)
Quali y o Li e −0.399 (p< 0.001) −0.358 (p< 0.001) 0.020 (p= 0.822)
HADS Anxie y −0.155 (p= 0.072) −0.443 (p< 0.001) 0.243 (p= 0.005)
Dep ession 0.226 (p = 0.008) 0.308 (p< 0.001) −0.088 (p= 0.312)
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