Validation and cultural adaptation of the Integrated Palliative care Outcome Scale (IPOS) for the Portuguese population

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 © The Au ho (s). 2020 Open Access This a icle is licensed unde a C ea i e Commons A ibu ion 4.0 In e na ional License, which pe mi s use, sha ing, adap a ion, dis ibu ion and ep oduc ion in any medium o o ma , as long as you gi e app op ia e c edi o he o iginal au ho (s) and he sou ce, p o ide a link o he C ea i e Commons licence, and indica e i changes we e made. The images o o he hi d pa y ma e ial in his a icle a e included in he a icle's C ea i e Commons licence, unless indica ed o he wise in a c edi line o he ma e ial. I ma e ial is no included in he a icle's C ea i e Commons licence and you in ended use is no pe mi ed by s a u o y egula ion o exceeds he pe mi ed use, you will need o ob ain pe mission di ec ly om he copy igh holde . To iew a copy o his licence, isi h p://c ea i ecommons.o g/licenses/by/4.0/. The C ea i e Commons Public Domain Dedica ion wai e (h p://c ea i ecommons.o g/publicdomain/ze o/1.0/) applies o he da a made a ailable in his a icle, unless o he wise s a ed in a c edi line o he da a. * 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) An unes and Fe ei a BMC Pallia i e Ca e (2020) 19:178 Page 9 o 11