Exploring the Score Equivalence of the English and Chinese Versions of the Brief Assessment Scale for Caregivers

Rese arc h Article E x pl ori n g t h e S c or e E q ui v al e n c e of t h e E n glis h a n d C hi n es e V e rsi o ns of t h e Bri ef Ass ess m e nt S c al e f or C ar e gi v ers Gr a c e M eij u a n Y a n g, M B B C hir, M A, M R C P, M P H 1, 2 , S hirl y n H uiS h a n N e o, M B B S, M M e d(I nt M e d), M R C P 1 , Ir e n e T e o, M S, P h D 1, 2 , G e o k Li n g L e e, B S o c S ci, M S o c S ci, P h D 3 , J uli a n T h u m b o o, M B B S, M M e d (I nt M e d), F R C P ( E di n), F A M S ( R h e u m at ol o g y) 4, 5, 6 , J o h n C hi a, M B B S, M R C P, F A M S ( M e di c al O n c ol o g y) 7 , A n ni e L a u, B H S N, M N 8 , A u dr e y K o h, B S c 1 , D e b r a Q u, M S N 1 , Willi a m W ai L a m C h e, B A, M A, M P hil 9 , H w e e Li n W e e, P h D 10,11 , M yr a Gl aj c h e n, D S W 1 2 , a n d Yi n B u n C h e u n g, P h D, Cst at 13,14 A bst r a ct B a c k g r o u n d: M ultili ng ual o utc o m e m eas ur es ar e us e d s o t hat r es ear c h st u di es ar e m or e g e n eraliza bl e acr oss la ng uag e c o nt e xts. O bj e cti v e: T o d et er mi n e t h e sc or e e q uival e nc e of t h e E nglis h a n d C hi n es e v ersi o ns of Bri ef Ass ess m e nt Scal e f or Car egiv ers ( B A S C) i n Si nga p or e. M et h o d: Car egiv ers of pati e nts wit h a dva nc e d ca nc er c o m pl et e d t h e B A S C i n eit h er E nglis h or C hi n es e. M ulti varia bl e li n ear r egr essi o n a nalysis was us e d t o c o m par e t h e m ea n B A S C t otal a n d fact or sc or es b et w e e n t h e 2 la ng uag e v ersi o ns, wit h a dj ust m e nt f or p ossi bl e c o nf o u n di ng varia bl es. E q uival e nc e was d eclar e d if t h e 9 0 % c o nfi d e n c e i nt erval of t h e m ea n sc or es f ell e ntir ely wit hi n a n e q uival e nc e z o n e of ± 0. 5 sta n dar d d eviati o n. R es ults: T h er e w er e 5 2 1 et h nic C hi n es e partici pa nts, of w h o m 2 1 4 a ns w er e d t h e E nglis h v ersi o n a n d 3 0 7 a ns w er e d t h e C hi n es e v ersi o n. T h e B A S C t otal a n d fa ct or sc or es m et t h e crit eria f or e q uival e nc e. Cr o n bac h c o effici e nts w er e si milar a n d e x pl orat ory fact or a nalysis s h o w e d si milar 2-fact or str uct ur es f or b ot h la ng uag e v ersi o ns. C o n cl usi o n: T h e E nglis h a n d C hi n es e v ersi o ns of t h e B A S C w er e f o u n d t o b e e q uival e nt i n t er ms of si milar a dj ust e d m ea n sc or es, Cr o n bac h , a n d fact or str uct ur es. K e y w o r ds car egiv ers, ca n c er, m eas ur e m e nt 1 Divisi o n of S u p p ortiv e a n d Palliativ e Car e, Nati o nal Ca nc er C e ntr e, Si nga p or e, Si nga p or e 2 Li e n C e ntr e f or Palliati v e Car e, D u k eN US M e dical S c h o ol, Si nga p or e, Si nga p or e 3 D e part m e nt of S ocial W or k, Fac ulty of Arts a n d S ocial Sci e nc es, Nati o nal U ni v ersit y of Si nga p or e, Si nga p or e, Si nga p or e 4 D e part m e nt of R h e u mat ol ogy a n d I m m u n ol ogy, Si nga p or e G e n eral H os pital, Si nga p or e, Si nga p or e 5 D u k eN U S M e dical Sc h o ol, Si nga p or e, Si nga p or e 6 Y o ng L o o Li n Sc h o ol of M e dici n e, Nati o nal U niv ersity of Si nga p or e, Si nga p or e, Si nga p or e 7 D e part m e nt of M e dical O nc ol ogy, Nati o nal Ca nc er C e ntr e, Si nga p or e, Si nga p or e 8 D e part m e nt of N ursi ng, Si nga p or e G e n eral H os pital, Si nga p or e, Si nga p or e 9 Sc h o ol of Tra nslati o n, Ha ng S e ng Ma nag e m e nt C oll eg e, H o ng K o ng, C hi na 1 0 Sa w S w e e H oc k S c h o ol of P u blic H ealt h, Nati o nal U niv ersit y of Si nga p or e, Si nga p or e, Si nga p or e 1 1 D e part m e nt of P har macy, Fa c ult y of Sci e nc e, Nati o nal U niv ersity of Si nga p or e, Si nga p or e, Si nga p or e 1 2 D e part m e nt of Fa mily a n d S o cial M e dici n e, Al b ert Ei nst ei n C oll eg e of M e dici n e, N Y, U S A 1 3 C e ntr e f or Q ua ntitativ e M e dici n e, D u k eN U S M e di cal Sc h o ol, Si nga p or e, Si nga p or e 1 4 C e ntr e f or C hil d H ealt h R es earc h, U ni v ersit y of Ta m p er e a n d Ta m p er e U niv ersit y H os pital, Fi nla n d C or r es p o n di n g A ut h o r: Grac e M eij ua n Ya ng, Divisi o n of S u p p ortiv e a n d Palliativ e Car e, Nati o nal Ca nc er C e ntr e, 1 1 H os pital Driv e, Si nga p or e 1 6 9 6 1 0, Si nga p or e. E mail: grac e. ya ng. m.j @si ng h ealt h.c o m.sg J o ur nal of Pati e nt E x p eri e nc e 2 0 2 0, V ol. 7( 2) 2 0 02 0 7 ªT h e A ut h or(s) 2 0 1 9 Articl e r e us e g ui d eli n es: sag e p u b.c o m/j o ur nalsp er missi o ns D OI: 10.1177/2374373519836477 j o ur nals.sag e p u b. c o m/ h o m e/j p x Cr eativ e C o m m o ns N o n C o m m er cial C C B YN C: T his articl e is distri b ut e d u n d er t h e t er ms of t h e Cr eativ e C o m m o ns Attri b uti o nN o n C o m m ercial 4. 0 Lic e ns e ( htt ps://cr eativ ec o m m o ns. org/lic e ns es/ bync/ 4. 0/) w hi c h p er mits n o n-c o m m ercial us e, r e pr o d ucti o n a n d distri b uti o n of t h e w or k wit h o ut f urt h er p er missi o n pr o vi d e d t h e origi nal w or k is attri b ut e d as s p e cifi e d o n t h e S A G E a n d O p e n Ac c ess pag es ( htt ps:// us.sag e p u b.c o m/ e nus/ na m/ o p e n-acc es s-at-sag e). I nt r o d u cti o n Wit h m ultiet h nic s o ci eties a n d gl o b aliz ati o n of r es ear c h, t h er e is a n e e d f or tr a nsl at e d i nstr u m e nts t o m e as ur e car e gi v er-r e p orte d o ut c o m es ( 1). C ha n gi n g gl o b al d e m ogra p hics i n dicate t hat t he d o mi na nce of t he E n glis h la n g ua ge will decli n e a n d m ultili n g u alis m will be i n creasi n gl y i m p orta nt ( 2). M ultili n g ual i nstr u me nts ca n be use d t o m e as ure o utc o m es i n differe nt la n g ua ge gr o u ps s o t hat researc h st u dies ca n be m ore ge neraliza ble acr oss la n g ua g e c o nte xts. T o c o m p ar e a n d a g gr e g at e r es ults a cr oss t h es e differ e nt l a ng ua ge gr o u ps, e q ui v ale n c e bet w ee n tr a nsl ate d versi o ns of t h e s a me q uesti o n n air e n ee ds t o b e s h o w n s o t hat sc or e diff er e n ces will refle ct r ealgr o u p diff er e n ces r at h er t h a n meas ure me nt varia bilit y d ue t o la n g ua ge versi o ns ( 1, 3 – 5). T h e Brief Assess me nt Scale f or Care gi vers ( B A S C) is a 1 4-it e m q uesti o n n air e t hat w as de vel o pe d t o me as ur e t h e ne g ati ve a n d p ositi v e as pects of t he c are gi vi n g e x perie nce ( 6). It has t he a d va nta ge of bei n g s h orter t ha n ot her si milar i nstr u me nt, s uc h as t he Care Gi ver O nc ol o g y Q ualit y of Life q u esti o n naire t h at has 2 9 ite ms a n d t he Care gi ver Reacti o n Ass ess me nt t hat has 2 4 ite ms ( 7 – 9). As a s h orter scal e, t he B A S C is q uic ker a n d m ore feasi ble t o b e a d mi nistere d i n b ot h t h e cli ni cal a n d r es e ar c h c o nt e xt. T h e B A S C als o i n cl u des a p ositi v e p ers o nal i m p a ct s u bsc al e, w hi c h is a n i m p orta nt area t o care gi vers t h at ot her i nstr u me nts ge nerall y d o n ot a d dress well ( 1 0). T h e car e gi vi n g e x p erie n ce m eas ur e d b y t h e B A S C is i m p orta nt as fa mil y car e gi vers of patie nts wit h ca ncer ofte n fa ce m ulti ple c h all e n g es i n t h eir i nf or mal c ar e gi vi n g a n d ma y e ve n ha ve hi g her le vels of u n m et nee ds c o m pare d t o patie nts ( 1 1 – 1 7). T he si m ulta ne o us tre n ds of l o n ger s ur vi val, greater m or bi dit y, a n d s h orter h os pit al i n patie nt sta ys mea n t h at ma n y patie nts ar e pri maril y care d f or i n t h e c o m m u nit y a n d t hat f a mil y me m bers pla y a vital care gi vi n g r ole ( 1 8, 1 9). T o m eas ur e t his c ar e gi vi n g e x p eri e n c e, t h e B A S C w as d e v el o p e d i n E n glis h a m o n g car e gi vers of p atie nts wit h me dical ill n esses s uc h as a d va nce d ca ncer ( 6). It was s u bseq u e ntl y tra nslate d i nt o C hi nese a n d t h e C hi nese versi o n w as v ali d ate d i n t h e p o p ul ati o n of C hi n es e car e gi v ers i n t h e U nite d States ( 2 0). T heref or e, t he B A S C ca n be a d mi nistere d i n eit her E n glis h or C hi nese, 2 of t he c o m m o nest la ng u a ges use d i n t he w orl d ( 2, 2 1). Alt h o u g h t he E n glis h a n d C hi nese versi o ns of t he B A S C ha v e bee n vali date d se par atel y, e q ui v ale nce b et wee n t he 2 versi o ns has n ot bee n re p orte d. T he o verall ai m of t his st u d y was t o det er mi ne t he sc ore e q ui val e nce of t h e E n glis h a n d C hi n ese versi o ns of B A S C i n Si n ga p ore ( 2 2 – 2 5). Sec o n dar y ai ms were t o c o m par e t he i nter nal c o nsist e n c y a n d fact or str uct ures f or t he 2 la n g u a ge versi o ns. M et h o d St u dy Setti ng a n d P artici p a nts Si n g a p ore is a m ultiet h nic s o ciet y i n S o ut h e ast Asia w here E n glis h is t he w or ki n g la n g ua ge a n d m e di u m of i nstr ucti o n i n s c h o ols. M ost Si n ga p or ea ns are bili n g u al i n E n glis h a n d a m ot her t o n g ue. A cc or di n g t o t he c e ns us i n 2 0 1 0, 7 4. 1 % of t h e resi d e nts ar e of C hi n es e d es c e nt wit h C hi n es e as t heir m ot her t o n g u e. It is esti m at e d t hat i n t h e Si n g a p or e p o p ulati o n, 8 0 % ar e E n glis h lit er at e a n d 6 5 % ar e C hi n es e liter ate ( 2 6). T h e Nati o n al Ca ncer Ce ntre of Si n ga p ore pr o vi des c are f or a p pr o xi m at el y 6 5 % of p ati e nts wit h c a n cer s e e n b y g o ver n me nt-li n ke d healt h-care i nstit uti o ns i n Si n ga p ore. A s ur v e y was c o n d ucte d o n fa mil y care gi vers of patie nts wit h sta ge III or I V s oli d t u m ors t o de vel o p, vali date, a n d esta blis h t h e meas ure me nt e q ui vale nce of a n E n glis h a n d C hi nese versi o n of a q u esti o n naire f or t he assess me nt of car e gi ver healt h-r elate d q ualit y of lif e. I n t his st u d y, a fa mil y care gi ver was defi n e d as a fa mil y me m ber w h o was ta ki n g direct care of t he patie nt ’s da y-t oda y a n d healt h-care nee ds or e ns uri n g pr o visi o n of car e t o me et t h e n ee ds or w as t he d ecisi o n ma ker wit h re g ar d t o t he p atie nt ’s nee ds a n d healt h car e. P ote ntial care gi ver partici pa nts were a p pr oac he d w h e n t he y were i n h os pital or i n t he o ut pati e nt cli nic acc o m pa n yi n g t he patie nt. Partici pa nts c h ose t o a ns wer a n E n glis h versi o n or a C hi n ese versi o n of t he s ur v e y, acc or di n g t o t heir o w n prefere nce. S ur ve ys were self-a d mi nister e d w here p ossi ble, a n d i nter vie wer-a d mi nist ere d ot her wise, f or e xa m pl e, p o or e yesi g ht or illiterac y. I n a d diti o n t o t h e s ur ve y ite ms m e as uri n g healt h-rel ate d q u alit y of lif e, p arti ci p a nts c o m pl et e d t h e B A S C a n d sel e cte d ite ms fr o m t he F u ncti o nal Ass ess me nt of Ca n c er T h era p y — Ge neral sc ale ( 2 7, 2 8). T he res ults pertai ni n g t o t he d e v el o p me nt of t h e car e gi v er q ualit yof-lif e m e as ureme nt scale will be re p orte d else w here; t his article re p orts t he fi n di n gs i n relati o n t o t h e sc or e e q ui vale nce of t he E n glis h a n d C hi nese versi o ns of t he B A S C. O nl y et h ni c C hi n ese partici p a nts w er e i ncl u d e d i n t his a nal ysis t o r e d u ce t he effect of u n o bser ve d c o nf o u n di n g relate d t o et h nicit y. T he B A S C I nstr u me nt T h e E n glis h versi o n of t he B A S C has 1 4 ite ms wit h Cr o nbac h α ra n gi n g fr o m . 7 1 t o . 8 8 f or t he t otal scale; it is a gl o b al m e as ure of b ot h ne gati ve a n d p ositi ve as pects of t he care gi vi n g e x perie nce ( 6, 2 0). T he B A S C c o m prises 5 fact ors wit h Cr o n b ac h α ra n gi n g fr o m . 8 9 t o . 5 8 a cr oss f act ors: ne g ati ve p ers o n al i m pact (ite ms 2, 3, 4, 6, a n d 9), p ositi ve pers o nal i m pact (ite ms 1 1, 1 2, a n d 1 4), ot her fa mil y me mbers (ite ms 1 0 a n d 1 3), me dical iss ues (ite ms 7, 8, a n d 9), a n d c o ncer n a b o ut l o v e d o ne (ite ms 1 a n d 5) ( 6, 2 9). T he C hi n ese versi o n of B A S C w as de vel o pe d f or C hi n ese fa mil y care gi v ers i n t he U nite d St ates; it i n cl u de d 1 0 a d diti o n al it e ms t h at a d dr ess e d l a n g u a g e or c ult ur al c o n c er ns of C hi n ese-s p e a ki n g c are gi vers wit hi n t h e U S healt h s yst e m ( 2 0). H o we ver, t hes e a d diti o nal it e ms are n ot rele va nt f or t h e Si n ga p ore c o nt e xt; f or e xa m ple, it ca n be l o nel y t o be a C hi n ese care gi ver i n a Wester n me dical s yste m. T heref ore, we use d o nl y t he C hi nese tra nsl ati o n of t he 1 4 it e ms i n t h e Y a ng et al 2 0 1 E n glis h versi o n. T he E n glis h a n d C hi n ese versi o ns of t he B A S C are a v aila ble as o nli n e s u p ple me ntar y files. St atistic al C o nsi der atio ns All ite ms were c o de d s uc h t hat a hi g her s c ore refl e cte d better care gi ver o utc o mes. T he 4p oi nt Li kert s c ales f or t he ne gati vel y w or de d ite ms (ite ms 11 0) were rec o d e d as 3 ( n ot at all), 2 (a littl e), 1 (s o m e), a n d 0 (a l ot of). Si mil arl y, t he “a gree/ disa gree ” scale of t he p ositi vel y w or de d ite ms (ite ms 1 11 4) were rec o de d as 3 (a gree a l ot), 2 (a gree a littl e), 1 ( dis a gr ee a little), a n d 0 ( disa gr ee a l ot). Ite ms 5 t o 1 4 all o we d f or a “n ot a p pli c a bl e ” ( N A) res p o ns e. A mea n sc ore was c alc ulate d f or e a c h of t h e 5 i n di vi d ual fact ors as well as t he t otal B A S C. Ite ms t hat w ere N A wer e n ot i ncl u de d i n t h e a nal ysis. T he mea n B A S C sc or e was c o m p ute d b y s u m mi n g u p t he n o n missi n g a n d n o nN A ite ms i n eac h fact or, t he n di vi di n g b y t he n u m ber of ite ms t hat were n ot missi n g or N A. T his ga v e a sc ore scale d fr o m 0 t o 3, wit h a hi g her sc ore i n dic ati n g b ett er car e gi v er o utc o mes. If all t he ite ms i n a n i n di vi d ual fact or were missi n g or N A, t he n t he fact or sc ore was n ot c o m p ut e d. De m o gra p hi c varia bles of c are gi vers a n d cli nical c haracteristics of care reci pie nts were c o m pare d bet w e e n participa nts w h o c o m pl ete d t he C hi nese versi o n a n d t h ose w h o c o m plete d t he E n glis h versi o n. St u de nt t test was use d t o c o m pare a ge a n d χ 2 test was use d t o c o m pare cat e g orical vari a bles s uc h as e d ucati o n le v el a n d perf or ma nce stat us. T h e perf or ma nce stat us sc ore ra n ge d fr o m “wit h o ut s y m pt o ms” ( 0), “ wit h s y m pt o ms; f ull y a m b ulat or y ” ( 1), “ wit h s y m pt o ms; i n b e d l ess t ha n 5 0 % of t h e d a y” ( 2), “wit h s y m pt o ms; i n be d m ore t ha n 5 0 % of t he da y, b ut n ot be dri d d e n,” t o 4 ( be dri d d e n). T he sc ore 5 ( deat h) was N A i n t he baseli n e s ur ve y ( 3 0). M ulti varia ble li near re gressi o n a nal ysis was use d t o c o mpare t he mea n B A S C sc ores bet w e e n t h e 2 l a n g u a ge versi o ns, wit h a dj ust m e nt f or g e n d er, a g e, m arit al st at us, e d u c ati o n l e v el, r el ati o ns hi p t o t h e p ati e nt, w h et h er t h e care gi ver p h ysicall y pr o vi de d care t o t he patie nt, t he perf orma n c e stat us of t he patie nt, w het her t h e s ur ve y was selfa d mi nist er e d, a n d setti n g of c are (i n patie nt or o ut patie nt). I n a m ultiet h nic s o ciet y w here t he w or ki n g la n g ua g e is E n glis h, la n g ua ge pr efere nce ma y be relate d t o s o me of t hese fact ors s uc h as a ge a n d e d ucati o n le vel, w hic h ma y, i n t ur n, be relate d t o t he e x perie nce of care gi vi n g. Statistical a dj ustme nt was, t heref ore, perf or me d t o deter mi ne t he effect of l a n g u a g e wit h o ut p ot e nti al c o nf o u n di n g b y t h es e ot h er fact ors. T h e 9 0 % c o nfi de nce i nter vals ( CI) of t h e mea n differe nce of B A S C t otal a n d f a ct or sc or es b et we e n t h e 2 l a n g ua ge versi o ns w as esti m at e d. E q ui v al e nc e w as d eclar e d if t h e 9 0 % CI fell e ntirel y wit hi n a n e q ui vale nce z o ne. N o ne q uivale nce was declare d if t he 9 0 % CI was e ntirel y o utsi de t he z o ne. T he e q ui vale nce z o ne was defi n e d as ± 0. 5 sta n dar d d e viati o n ( S D). T his w as b as e d o n a s yste m ati c r e vi e w, w hi c h s h o w e d t h at t h e t hr es h ol d of dis cri mi n ati o n f or c h a n ges i n h e alt h-relate d q ualit y of life was a p pr o xi matel y half a n S D ( 3 1). T he li mit of discri mi nati o n t o 1 p art i n 7, w hic h is a p pr o xi matel y 0. 5 S D, is als o o bser ve d o ver a wi de ra n ge of dis cri mi nati o n tas ks, s uc h as p oi nts o n a li n e a n d salti n ess of tastes ( 3 2). T h e sa m pl e size of 3 0 0 per la n g ua ge gr o u p was deci d e d f or t he m ai n p ur p os e of de vel o pi n g a n e w q ualit yof-lif e q u esti o n n air e f or c ar e gi v ers. Ass u mi n g t h e c olli n e arit y T a bl e 1. Car e gi v er P arti ci p a nt C h ar a ct eristi cs b y L a n g u a g e V ersi o n of B A S C. C haract eristic E nglis h, n ¼ 2 1 4 C hi n es e, n ¼ 3 0 7 P Val u e a Mal e g e n d er 9 5 ( 4 4. 4 %) 1 1 6 ( 3 7. 8 %) . 1 3 Ag e, m ea n ( S D) 4 6. 3 ( 1 3. 3) 5 1. 0 ( 1 3. 1) <. 0 1 Marital stat us <. 0 1 Marri e d 1 4 0 ( 6 5. 4 %) 2 4 7 ( 8 0. 5 %) Si ngl e 6 5 ( 3 0. 4 %) 5 1 ( 1 6. 6 %) Di v orc e d/s e parat e d/ wi d o w e d 9 ( 4. 2 %) 9 ( 2. 9 %) E d u cati o n l ev el <. 0 1 N o f or mal e d u cati o n/ pri mary s c h o ol 6 ( 2. 8 %) 8 1 ( 2 6. 4 %) S ec o n dary sc h o ol or I T E 5 3 ( 2 4. 8 %) 1 1 1 ( 3 6. 2 %) P osts ec o n dary l ev el ( di pl o ma, u niv ersity d egr e e, etc) 1 5 5 ( 7 2. 4 %) 1 1 5 ( 3 7. 5 %) R elati o ns hi p wit h pati e nt <. 0 1 S p o us e 5 7 ( 2 6. 7 %) 1 3 9 ( 4 5. 3 %) S o n/ da ug ht er 1 3 1 ( 6 1. 2 %) 1 1 5 ( 3 7. 5 %) Par e nt/si bli ng/ ot h er r elativ e 2 6 ( 1 2. 2 %) 5 3 ( 1 7. 3 %) Car egiv er p h ysically pr ovi d e d car e t o t h e pati e nt 1 4 1 ( 6 5. 9 %) 2 4 5 ( 7 9. 8 %) E C O G p erf or ma nc e stat us of pati e nt . 0 2 0 3 7 ( 1 7. 3 %) 2 7 ( 8. 8 %) 1 7 8 ( 3 6. 5 %) 9 9 ( 3 2. 3 %) 2 2 2 ( 1 0. 3 %) 4 2 ( 1 3. 7 %) 3 5 3 ( 2 4. 8 %) 9 4 ( 3 0. 6 %) 4 2 4 ( 1 1. 2 %) 4 5 ( 1 4. 7 %) Pri mary sit e of ca n c er . 8 2 C ol or ectal 5 0 ( 2 3. 4 %) 7 4 ( 2 4. 1 %) L u ng 4 3 ( 2 0. 1 %) 5 7 ( 1 8. 6 %) Br east 2 2 ( 1 0. 3 %) 3 6 ( 1 1. 7 %) Pr ostat e 1 7 ( 7. 9 %) 1 4 ( 4. 6 %) Pa ncr eas 1 3 ( 6. 1 %) 1 5 ( 4. 9 %) St o mac h 1 0 ( 4. 7 %) 1 8 ( 5. 9 %) Nas o p hary n x 8 ( 3. 7 %) 8 ( 2. 6 %) Ovar y 7 ( 3. 3 %) 1 4 ( 4. 6 %) Li v er 6 ( 2. 8 %) 1 5 ( 4. 9 %) Ki d n ey 6 ( 2. 8 %) 8 ( 2. 6 %) Ot h ers 3 2 ( 1 5. 0 %) 4 8 ( 1 5. 6 %) I n pati e nt s etti ng 1 2 0 ( 5 6. 1 %) 2 1 2 ( 6 9. 1 %) <. 0 1 S elf-a d mi nistrati o n of s urv ey 2 0 7 ( 9 6. 7 %) 2 6 5 ( 8 6. 3 %) <. 0 1 A b br eviati o ns: B A S C, Bri ef Ass ess m e nt S cal e f or Car egiv ers; E C O G, Easter n C o o p erativ e O nc ol og y Gr o u p; I T E, I nstit ut e of T ec h ni cal E d ucati o n; S D, sta n dar d d e viati o n. a P val u e o btai n e d fr o m 2 t est f or cat eg orical varia bl es a n d St u d e nt t t est f or c o nti n u o us varia bl es. 2 0 2 Jo ur n al of P atie nt Ex perie nce 7( 2) arisi n g fr o m c o variat e a dj ust me nt w o ul d lea d t o a varia nce i nflati o n fact or of 3, t he sa m pl e si z e of 3 0 0 per gr o u p w o ul d gi ve a p o wer of 9 0 % usi n g 9 0 % CI f or c o nfir mi n g e q ui vale n c e wit hi n ± 0. 5 S D bet wee n t he 2 la n g ua ge versi o ns. Cr o n b a c h α c oefficie nts f or t he B A S C t otal a n d fact or sc ores were calc ulate d f or t he E n glis h a n d C hi nes e versi o ns of B A S C, as i n dicat ors of i nter nal c o nsiste nc y. Res p o ns es fr o m partici pa nts wit h c o m plet e data wer e use d t o e x pl ore if t he E n glis h a n d C hi n es e v ersi o ns of B A S C ha ve si mil ar fact or str uct ures. E x pl orat or y fact or a nal ysis usi n g iterate d pri nci pal f a ct or e xtracti o n wit h o bli q u e pr o ma x r otati o n was c o n d u cte d se paratel y f or t he E n glis h a n d C hi nese versi o ns. A scree pl ot of t he ei ge n val ues of t he 1 4 fact ors was dra w n. Parallel a nal ysis was als o c o n d u cte d t o deter mi ne t he n u mber of fact ors t o r etai n ( 3 3). T his was perf or me d wit h 1 0 0 0 si m ulati o n r u ns, base d o n 4p oi nt s c ale data. We use d t h e 9 5t h p er c e ntil e fr o m t h e si m ul ati o n d at a, a n al o g o us t o c h o osi n g t he c o n ve nti o n al P val u e c ut off at . 0 5. R es ults T h ere were 5 2 1 et h nic C hi n ese partici pa nts, of w h o m 2 1 4 a ns were d t he E n glis h v ersi o n a n d 3 0 7 a ns wer e d t he C hi nese versi o n of B A S C. Parti ci p a nt c h ar a ct eristi cs were m ostl y bala nce d b et w e e n t he E n glis h a n d C hi nese versi o ns, e x c e pt partici pa nts w h o c o m pl ete d t he C hi nes e versi o n w ere ol der ( 5 1. 0 vs 4 6. 3 years ol d), less e d ucate d ( 3 7. 5 % vs 7 2. 4 % wit h p ostse c o n d ar y-le vel e d uc ati o n) a n d m or e li kel y t o b e t he patie nt ’s s p o us e ( 4 5. 3 % vs 2 6. 7 %; Ta bl e 1). Of t he 5 2 1 partici pa nts, 2 9 4 ha d c o m plete r es p o nses t o all 1 4 ite ms ( 1 4 8 f or t he E n glis h versi o n a n d 1 4 6 f or t h e C hinese versi o n). Ite m 8 ( dis c ussi n g me dical pr oce d ures if t he patie nt ’s heart or breat hi n g were t o st o p) a c c o u nte d f or m ost of t he ite ms mar k e d “N A ” ( 4 2/ 6 6 f or E n glis h a n d 1 3 4/ 1 6 1 f or C hi nese). Of t he 5 2 1 p arti ci pa nts, o nl y 3 3 ( 6. 3 %) ha d 2 ite ms mar k e d “N A ” a n d a f urt her 3 2 ( 6. 1 %) h a d 3 or m or e ite ms mar k e d “N A. ” C o m pari n g t he sc ores f or t he E n glis h a n d C hi nese versi o ns, b ot h t he t otal B A S C sc ores a n d eac h of t h e 5 fact or sc ores met t he criteria f or e q ui v ale nce, as i n dicate d b y 9 0 % CI falli n g wit hi n t he e q ui vale nce mar gi ns ( Ta ble 2). F urt herm ore, t he c o variate-a dj uste d differe nce bet w e e n t he 2 la ng u a g e v ersi o ns w as s m all, r a n gi n g fr o m 0. 0 6 t o 0. 2 2, c orres p o n di n g t o a n effect size of a p pr o xi matel y 0. 1 S D t o 0. 2 5 S D o nl y. Fact or 5 (c o m prisi n g it e m 1 relati n g t o w orr y a n d ite m 5 relati n g t o distress a b o ut t he car e reci pie nt) ha d t h e lar gest a dj uste d diff ere n c e (effect si z e) bet wee n t he E n glis h a n d C hi nese v ersi o n, at 0. 2 5 S D. Ite m 1 r el ati n g t o w orr y a b o ut t h e care re ci pie nt ha d a n a dj uste d diff ere nce of 0. 1 8 ( 9 0 % CI: 0. 0 30. 3 3), c orres p o n di n g t o a n effect size of a p pr o xi matel y 0. 1 8 S D. Ite m 5 rel ati n g t o distress a b o ut t h e care reci pie nt ha d a n a dj ust e d differe nce of 0. 2 5 ( 9 0 % CI: 0. 0 90. 4 0), c orres p o n di n g t o a n eff e ct size of a p pr o ximatel y 0. 2 3 S D. T he o utc o mes were w orse i n t he E n glis h versi o n c o m pare d t o t he C hi nese versi o n. T h e Cr o n bac h α f or t he B A S C t otal sc ore w as . 8 8 f or t he E n glis h versi o n a n d . 8 8 f or t he C hi n ese versi o n ( Ta bl e 3). F or fact or 3 ( ot her fa mil y me m bers), t he c oeffici e nt was . 4 1 i n t he E n glis h versi o n a n d . 4 7 i n t he C hi nese versi o n. Ot her fact ors h a d c oefficie nts r a n gi n g fr o m . 6 8 t o . 8 6 i n t he E n glis h versi o n a n d . 7 1 t o . 8 2 i n t h e C hi nese versi o n. T h e fact or str uct ures f or t he E n glis h a n d C hi nese versi o ns were e x pl ore d usi n g t he 2 9 4 partici pa nts wit h c o m plete dat a. T h e s cree pl ots of ei ge n val ues are s h o w n i n Fi g ure 1. T w o fact ors clearl y st o o d o ut, wit h t h e t o p 2 ei ge n val ues bei n g si milar acr oss t h e 2 la n g ua ge versi o ns. T h e res ults of parallel a n al ysis are s u m marize d i n Ta ble 4. I n b ot h t he E n glis h a n d t h e C hi nese v ersi o ns, o nl y t he first 2 fa ct ors ha d o bser ve d ei g e n val ues lar ger t ha n t he 9 5t h per ce ntile o btai ne d fr o m si m ulate d data. T he t hir d lar gest ei ge n val ues we o bser ve d T a bl e 2. B A S C S c or es by La ng uag e V ersi o n, E q uival e nc e Margi n, a n d A dj ust e d Diff er e nc e B et w e e n t h e 2 La ng uag e V ersi o ns. C haract eristic Sc or e f or E nglis h V ersi o n Sc or e f or C hi n es e V ersi o n E q ui val e nc e Margi n ( ± 0. 5 S D) E nglis h vs C hi n es e diff er e nc e, M ea n ( 9 0 % CI) M ea n ( S D) N u m b er of Parti ci pa nts M ea n ( S D) N u m b er of Parti ci pa nts U na dj ust e d A dj ust e d a T otal B A S C sc or e 1. 9 5 ( 0. 5 8) 2 1 4 2. 0 1 ( 0. 5 6) 3 0 7 ± 0. 2 9 0. 0 6 ( – 0. 0 2 t o 0. 1 5) 0. 1 3 ( 0. 0 4 t o 0. 2 2) Fact or 1: N egativ e p ers o nal i m pact 2. 0 0 ( 0. 8 1) 2 0 6 2. 0 3 ( 0. 7 6) 2 9 5 ± 0. 3 9 0. 0 3 ( – 0. 0 9 t o 0. 1 5) 0. 1 6 ( 0. 0 3 t o 0. 2 9) Fact or 2: P ositiv e p ers o nal i m pact 2. 4 1 ( 0. 6 0) 1 8 9 2. 5 5 ( 0. 6 0) 2 7 0 ± 0. 3 0 0. 1 4 ( – 0. 0 5 t o 0. 2 3) 0. 0 6 ( – 0. 0 4 t o 0. 1 6) Fact or 3: Ot h er fa mily m e m b ers 2. 3 9 ( 0. 6 5) 2 0 3 2. 4 5 ( 0. 6 7) 2 8 4 ± 0. 3 3 0. 0 5 ( – 0. 0 5 t o 0. 1 5) 0. 0 7 ( – 0. 0 5 t o 0. 1 8) Fact or 4: M e dical iss u es 1. 8 5 ( 0. 9 7) 1 7 0 1. 8 4 ( 0. 8 4) 1 7 0 ± 0. 4 5 0. 0 1 ( – 0. 1 7 t o 0. 1 5) 0. 1 3 ( – 0. 0 4 t o 0. 3 1) Fact or 5: C o n c er n a b o ut l ov e d o n e 0. 9 5 ( 0. 8 2) 2 1 3 0. 9 8 ( 0. 8 7) 3 0 2 ± 0. 4 2 0. 0 3 ( – 0. 0 9 t o 0. 1 6) 0. 2 2 ( 0. 0 9 t o 0. 3 5) A b br eviati o ns: B A S C, Bri ef Ass ess m e nt S cal e f or Car egiv ers; CI, c o nfi d e nc e i nt erval; S D, sta n dar d d eviati o n. a A dj ust e d f or g e n d er, ag e, marital stat us, e d ucati o n l ev el, r elati o ns hi p t o t h e pati e nt, w h et h er t h e car egiv er p hysically pr ovi d e d car e t o t h e pati e nt, t h e p erf or ma nc e stat us of t h e pati e nt, w h et h er t h e s urv ey was s elf-a d mi nist er e d, a n d s etti ng of car e (i n pati e nt or o ut pati e nt). Y a ng et al 2 0 3 i n t he E n glis h a n d C hi n ese data sets were c o nsist e nt wit h c ha n ce fi n di n gs. T her ef or e, we de ci d e d t o use a 2-f act or s ol uti o n f or b ot h t he E n glis h a n d t he C hi nese versi o ns. T he fact or l oa di n gs f or t he C hi nese a n d E n glis h versi o ns were si milar, wit h ite ms 1 t o 1 0 l oa di n g o n t o o ne fact or, w hi c h we call “b ur d e ns of c are gi vi n g, ” a n d ite ms 1 1 t o 1 4 l oa di n g o n t o a n ot her fact or, w hic h we call “re war ds of car e gi vi n g” ( Ta ble 5). Dis c ussi o n I n or d er t o use m ultili n g ual i nstr u me nts i n differe nt la n g ua ge gr o u ps, c o m p ara bilit y bet wee n v ersi o ns nee ds t o be s h o w n. T his st u d y assesse d t he sc ore e q ui v ale nce, i nter nal c o nsiste n c y, a n d fact or str uct ures of t he E n glis h a n d C hi nese versi o ns of t he B A S C. O verall, t he 2 la n g ua g e versi o ns wer e f o u n d t o be e q ui val e nt i n ter ms of si milar a dj uste d mea n sc ores, Cr o n bac h α , a n d fact or str uct ures. T h e mea n a n d 9 0 % CI f or t he B A S C t ot al a n d s u b d o mai n sc ores all fell wit hi n t he e q ui val e nce z o ne defi ne d as ± 0. 5 S D. T h e s c or e diff er e n c e b et w e e n l a n g u a g e v ersi o ns f or fact or 5 ( c o ncer n f or l o ve d o ne) was t he hi g hest, wit h better o utc o m es i n t he C hi nese versi o n, al b eit t he diff ere nce was o nl y 0. 2 5 S D a n d t he 9 0 % CI was still wit hi n t he pr e defi ne d e q ui vale nce z o ne. T his f a ct or c o m prise d ite ms 1 a n d 5: o ne relati n g t o w orr y a b o ut t h e care reci pie nt e v e n w he n t h e care gi ver was n ot wit h hi m or her a n d t he ot her r elati n g t o distress o vers eei n g t he c are r eci pie nt i n s o m u c h p ai n or disc o mf ort. T he ter m “w orr y ” i n ite m 1 is tr a nslate d t o “y ō u lǜ ” (忧 虑 ); t he E n glis h versi o n m a y be less ne gati ve t h a n t he C hi n ese versi o n of t he ter m, a n d t his ma y be w h y E n glis h res p o n de nts rate d hi g her e xte nt of t his ba d o utc o m e of b ei n g w orrie d. Alter nati v e C hi nese ter m “d ān y ō u ” (担 忧 ) or “d ān x īn ” (担 心 ) c o ul d be c o nsi dere d i nst e a d. Si milarl y, t h e E n glis h ter m “distresse d ” i n ite m 5 ma y be less ne gati ve t ha n t he C hi n ese ter m “ k ǔ n ǎo ” (苦 恼 ). N e vert h eless, t he diff ere nces i n res p o nses are c o nsi dere d s mall b y C o he n defi niti o n ( 3 4). Cr o n b a c h α c o effici e nts f or b ot h t h e t ot al a n d f act or sc ores were c o m para ble bet w e e n t he E n glis h a n d C hi nese versi o ns. W he n c o m pare d wit h t he ori gi nal B A S C st u d y, t he c urre nt st u d y re p orte d hi g her i nter n al c o nsiste n c y f or t h e t otal B A S C sc ore a n d 4 of 5 B A S C s u bs c ales, rei nf orci n g t h e r elia bilit y of t he scale f or m e as uri n g b ur de n i n care gi vers of patie nts wit h ca n c er. H o w e ver, t h e Cr o n bac h α c oefficie nts w er e less t ha n . 5 f or t h e “ ot h er f a mil y m e m b ers ” Fi g u r e 1. S cr e e pl ots of eig e n val u es. T a bl e 3. C o effici e nts f or t h e T otal B A S C Sc or e a n d Sc or es f or S u b d o mai ns. C haract eristic E nglis h V ersi o n C hi n es e V ersi o n T otal B A S C sc or e . 8 8 . 8 8 Fact or 1: N egativ e p ers o nal i m pact . 8 6 . 8 2 Fact or 2: P ositiv e p ers o nal i m pact . 8 4 . 8 2 Fact or 3: Ot h er fa mily m e m b ers . 4 1 . 4 7 Fact or 4: M e dical iss u es . 8 6 . 7 2 Fact or 5: C o n c er n a b o ut l ov e d o n e . 6 8 . 7 1 A b br eviati o n: B A S C, Bri ef Ass ess m e nt S cal e f or Car egiv ers. 2 0 4 Jo ur n al of P atie nt Ex perie nce 7( 2) fact or, s u g gesti n g t hat t he 5-f a ct or str uct ure i n t h e ori gi nal scale d oes n ot a p pl y t o o ur sa m ple of care gi vers of p atie nts wit h a d va n c e d ca ncer i n Si n ga p ore. T his is c o nfir me d b y t he fact or a nal ysis t hat yi el de d a 2-fact or str uct ure i nstea d. O n e p ossi ble reas o n f or t he differe nce i n fact or str uct ure c o ul d be d ue t o t he differe nce i n fact or a n al ysis met h o ds use d. T he ori gi nal U S st u d y e m pl o y e d pri n ci p al c o m p o n e nts e xtracti o n wit h vari ma x r otati o n w hile we e m pl o y e d it erate d pri n ci p al f a ct or e xtr acti o n wit h o bli q u e pr o m a x r otati o n. H o we ver, we f o u n d t he sa me 2-f a ct or str uct ure i n o ur st u d y s a m pl e e v e n w h e n usi n g ot h er e xtr a cti o n a n d r ot ati o n met h o ds. A n ot h er p ossi ble reas o n c o ul d be cr oss-c ult ural fact ors s u c h as fa mil y str uct ure or le vel of acc ult urati o n a m o n g t he diff ere nt car e gi ver p o p ulati o ns i n Si n ga p ore a n d t h e U nite d States. T he “re w ar ds of c are gi vi n g” fact or i n o ur 2-f a ct or str uct ure c o m prise d all t he ite ms i n t he “p ositi ve p ers o nal i m pact” a n d 1 ite m fr o m t he “ ot h er fa mil y me m b ers ” fact ors i n t he ori gi n al 5-fact or str uct ure. T he “b ur de ns of care gi vi n g” fact or i n o ur 2-fact or str uct ure c o m prise d all ite ms i n t h e “ne gati ve pers o nal i m pact, ” “me dical iss ues, ” a n d “c o ncer n f or l o ve d o n e ” a n d 1 ite m fr o m t he “ot her fa mil y m e mbers ” fact ors i n t he ori gi nal 5-fact or str uct ure. It is n ot ne w t hat st u di es of patie nt-r e p orte d o utc o mes i n Asia d o n ot re plicate t he fa ct or str uct ure f o u n d i n West er n s o cieties. F or e xa m ple, alt h o u g h t he 8 s u bscales of t he S h ort F or m3 6 Healt h S ur ve y clearl y f or m a p h ysical a n d a me ntal c o m p o ne nt i n 9 E ur o pea n c o u ntries a n d t he U nite d States, t his patter n is n ot o bser ve d i n Si n ga p ore a n d Ja pa n ( 3 5– 3 7). Pr e vi o us q ualitati ve rese ar c h i n Si n ga p or e f o u n d t h at t h e c o nce pt of “ t ò n g kǔ ” (痛 苦 , lit erall y mea ns “pai n a n d bitt erness ”) ma y be descri be d as a “ wel di n g pai n a n d s uff eri n g s y n dr o m e,” s u g gesti n g a bl urri n g bet wee n t he p h ysical a n d e m oti o nal e x peri e nc es fr o m a n Asi a n c ult ur al vi e w p oi nt ( 1 0). Ta ke n t o get h er, healt h a n d q u alit yof-lif e c o nstr u cts see m t o be less c o m part me ntalize d i n Asia n c ult ure, w hic h ma y c a use a differe nce i n fa ct or str uct ur e of pati e nta n d care gi ver-re p orte d o utc o mes bet wee n East a n d West. A li mitati o n of t he prese nt st u d y is t h at assess me nt of meas ure me nt pr o perties t hat r e q uire l o n git u di nal data, s uc h as test – r etest relia bilit y a n d s e nsiti vit y t o c ha n ge, was n ot i n cl u de d. T hese were be y o n d t he sc o pe of t his st u d y, w hic h f o c us e d o n t he sc ore e q ui vale nce of t he 2 l a n g u a ge versi o ns of t he B A S C. A n ot her li mitati o n was t hat t he e xisti n g tra nslate d C hi nese v ersi o n of t he B A S C was use d a n d c ult ural a da ptati o n w as n ot p erf or m e d. H o w e v er, usi n g t h e e x act sa me v ersi o n h as t he a d v a nta g e of all o wi n g d at a a cr oss st u dies t o b e p o ole d a n d fi n di n gs acr oss st u dies t o b e c o mpare d. F urt her m ore, des pit e n ot ha vi n g l ocal a da ptati o n, t he C hi n ese versi o n has de m o nstrate d e x pect e d pr o perties i n t his Si n g a p orea n st u d y. C o n cl usi o n O ur st u d y fi n di n gs were t hat t h e E n glis h a n d C hi nese v ersi o ns of t he B A S C d e m o nstrate d sc ore e q ui v ale nce. I nter nal c o nsist e n c y a n d f a ct or str u ct ur es w er e als o c o m p ar a bl e bet wee n t he 2 la n g ua g e versi o ns. B ot h gl o ball y a n d l ocall y i n Si n ga p ore, ma n y pe o ple use C hi n ese as t h eir first la ng u a ge ( 2 1, 2 6). Wit h t he sc ore e q ui vale nce of t he E n glis h T a bl e 4. Eig e n val u es Fr o m O bs erv e d Data a n d Parall el A nalysis of Si m ulat e d Data. N u m b er of Fact ors R etai n e d E nglis h V ersi o n C hi n es e V ersi o n O bs erv e d Parall el A nalysis O bs erv e d Parall el A nalysis 1 5. 6 0 1. 5 6 5. 5 1 1. 6 9 2 2. 7 8 1. 4 1 2. 7 1 1. 5 2 3 1. 1 9 1. 3 2 1. 2 5 1. 3 9 4 0. 9 8 1. 2 4 0. 7 4 1. 2 9 5 0. 6 1 1. 1 8 0. 7 1 1. 2 1 6 0. 5 5 1. 1 2 0. 5 5 1. 1 3 T a bl e 5. Fact or L oa di ngs of t h e E nglis h a n d C hi n es e V ersi o ns of B A S C. It e ms E nglis h V ersi o n C hi n es e V ersi o n B ur d e ns of Car egivi ng R e war ds of Car egivi ng B ur d e ns of Car egivi ng R e war ds of Car egivi ng 7: Ma ki ng d ecisi o ns 0. 8 0 0. 7 3 8: M e di cal pr oc e d ur es 0. 7 8 0. 6 3 6: N ot e n o ug h ti m e f or y o ur w or k 0. 7 5 0. 7 4 2: D e pr ess e d 0. 7 5 0. 6 9 4: Ov er w h el m e d 0. 7 4 0. 8 3 3: N ot e n o ug h ti m e f or y o urs elf 0. 7 1 0. 6 6 9: C ha ng e d r elati o ns hi p wit h pati e nt 0. 6 9 0. 5 3 1 0: Strai n e d r elati o ns hi ps wit h ot h er fa mily m e m b ers 0. 6 6 0. 5 9 5: Pati e nt’s pai n or dis c o mf ort 0. 5 9 0. 6 8 1: W orri e d 0. 5 2 0. 5 5 1 1: Dra w n cl os er t o pati e nt 0. 9 2 0. 8 6 1 2: Br o ug ht m ea ni ng 0. 8 6 0. 8 3 1 4: Dra w n cl os er t o ot h er fa mily m e m b ers 0. 6 9 0. 6 5 1 3: F e el g o o d a b o ut mys elf 0. 6 3 0. 8 2 A b br eviati o n: B A S C, Bri ef Ass ess m e nt S cal e f or Car egiv ers. Y a ng et al 2 0 5 a n d C hi nes e versi o ns of t he B A S C c o nfir me d, t his i nstr ume nt c a n n o w b e use d i n Si n ga p or e a n d d ata fr o m b ot h la n g ua g e versi o ns c a n b e p o ole d f or a nal ysis. T he fi n di n gs als o pr o vi de preli mi nar y e vi de nce t hat t his i nstr u me nt has t h e p ote ntial f or use i n ot her C hi n ese-s pea ki n g p o p ul ati o ns a n d facilit ati n g cr ossc o u ntr y c o m paris o ns. W h e n c o m pare d t o t he ori gi nal B A S C, Cr o n b a c h α c oeffi ci e nts wer e si mil ar b ut t h ere w er e diff er e n ces i n f act or str uct ure. T he alt er n ati ve 2-fact or m o del i n o ur st u d y warra nts f urt her e x pl orati o n. I n a d diti o n, it w o ul d be a d va ntage o us t o i de ntif y c o m p o n e nts of car e gi ver b ur de n t hat are ge n erali z a bl e acr oss c o u ntries. A n i nt er n ati o nal st u d y c o ul d e x pa n d t he sa m ple size a n d i ncrease gl o bal i nsi g ht i nt o caregi ver b ur de n i n ca ncer. D e cl a r ati o n of C o nfli cti n g I nt e r ests T he a ut h or(s) decl are d n o p ote ntial c o nflicts of i nter est wit h res pect t o t he r esear c h, a ut h ors hi p, a n d/ or p u blicati o n of t his arti cle. Funding T he a ut h or(s) discl ose d rec ei pt of t he f oll o wi n g fi na ncial s u p p ort f or t h e researc h, a ut h ors hi p, a n d/ or p u bli cati o n of t his arti cle: T his st u d y w as f u n d e d b y t h e N ati o n al M e di c al R es e ar c h C o u n cil, Si n g a p or e ( N M R C/ H S R G/ 0 0 5 7/ 2 0 1 6) a n d t h e Li e n C e ntr e f or Palliati ve Care ( L C P C-I N 1 60 0 0 4). Grace Meij ua n Ya n g rec ei ve d salar y s u p p ort fr o m t he Li e n Ce ntre f or Palliati ve Care. S u p pl e m e nt al M at e ri al S u p ple me ntal material f or t his arti cle is a vail a ble o nli ne. R ef er e n c es 1. H er d ma n M, F o xR us h b y J, Ba dia X. ‘E q ui vale nc e ’ a n d t he tra nslati o n a n d a da ptati o n of he alt h-relate d q ualit y of life q uesti o n naires. Q ual Life R es. 1 9 9 7; 6: 2 3 7– 4 7. 2. Gr a d d ol D. T h e f ut ur e of l a n g u a g e. S ci e n c e. 2 0 0 4; 3 0 3: 1 3 2 9 – 3 1. 3. H a h n E A, B o de R K, D u H, C ell a D. E val uati n g li n g uistic e q ui vale nc e of p atie nt-re p orte d o utc o mes i n a ca ncer cli nical trial. Cli n Trials. 2 0 0 6; 3: 2 8 0– 9 0. 4. L u o N, Li M, C he valier J, Ll o y d A, Her d ma n M. A c o m paris o n of t he scali n g pr o perties of t he E n glis h, S pa nis h, Fre nc h, a n d C hi nese E Q5 D descri pti ve s yste ms. Q ual Life R es. 2 0 1 3; 22:2237–43. 5. H er d ma n M, F o xR us h b y J, Ba dia X. A m o del of e q ui val e nce i n t he c ult ural a d a ptati o n of H R Q o L i nstr u me nts: t h e U ni versalist a p pr oac h. Q ual Life Res. 1 9 9 8; 7: 3 2 3 – 3 5. 6. Glajc he n M, K or n blit h A, H o mel P, Frai di n L, Ma us k o p A, P orte n o y R K. D e v el o p me nt of a Brief Ass ess me nt Scale f or C ar e gi v ers of t h e m e dic all y ill. J P ai n S y m pt o m Ma n a g e. 2005;29:245–54. 7. Gi ve n C W, Gi ve n B, St o m mel M, C olli ns C, Ki n g S, Fr a n kli n S. T he car e gi ver re acti o n assess me nt ( C R A) f or care gi vers t o pers o ns wit h c hr o nic p h ysi cal a n d me nt al i m p air me nts. R es N urs Healt h. 1 9 9 2; 1 5: 2 7 1 – 8 3. 8. Mi n a ya P, B a u mstarc k K, Ber bis J, G o ncal ves A, Barl esi F, Mic h el G, et al. T h e C ar e Gi v er O n c ol o g y Q u alit y of Lif e q u esti o n n air e ( C ar G O Q o L): d e v el o p m e nt a n d v ali dati o n of a n i nstr u m e nt t o meas ure t he q u alit y of life of t h e car e gi vers of p atie nts wit h ca ncer. E ur J Ca ncer. 2 0 1 2; 4 8: 9 0 4 – 1 1. 9. Petri ne c A, B ura nt C, D o u glas S. C are gi ver reacti o n assessme nt: ps yc h o metric pr o perties i n care gi v ers of a d va nce d ca ncer patie nts. Ps yc h o o nc ol o g y. 2 0 1 7; 2 6: 8 6 2 – 5. 1 0. Lee G L, O w M Y, A k hil es wara n R, Pa n g G S, Fa n G K, G o h B H, et al. Q ualit y of life d o mai ns i m p ort a nt a n d rele va nt t o fa mil y c are gi vers of a d v a n ce d ca nc er pati e nts i n a n Asia n p o pulati o n: a q u alitati ve st u d y. Q ual Life Res. 2 0 1 5; 2 4: 8 1 7 – 2 8. 1 1. Be v a ns M, St er n b er g E M. Car e gi vi n g b ur d e n, str ess, a n d healt h effects a m o n g f a mil y care gi vers of a d ult ca ncer pati e nts. J A M A. 2 0 1 2; 3 0 7: 3 9 8– 4 0 3. 1 2. Gi v e n B A, Gi ve n C W, S her w o o d P R. Fa mil y a n d care gi v er nee ds o ver t he c o urse of t he ca ncer traje ct or y. J S u p p ort O nc ol. 2012;10:57–64. 1 3. S kle n ar o v a H, Kr u m pel ma n n A, H a u n M W, Frie deric h H C, H u ber J, T h o m as M, et al. W he n d o we nee d t o c are a b o ut t he care gi ver ? S u p p orti ve car e nee ds, a n xiet y, a n d de pressi o n a m o n g i nf or m al care gi vers of p atie nts wit h ca ncer a n d ca nc er s ur vi v ors. Ca ncer. 2 0 1 5; 1 2 1: 1 5 1 3– 9. 1 4. Areia N P, F o nseca G, Maj or S, Rel vas A P. Ps y c h ol o gi cal m orbi dit y i n fa mil y car e gi vers of pe o pl e li vi n g wit h ter mi nal ca ncer: Pr e v ale nc e a n d pre di ct ors. Palliat S u p p ort Care. 2 0 1 8: 1 – 8. doi: 10.1017/S1478951518000044 (e-published ahead of print) 1 5. Gra n de G, R o wla n d C, v a n de n Ber g B, Ha nratt y B. Ps yc h ol o gi cal m or bi dit y a n d ge ner al healt h a m o n g fa mil y care gi v ers d uri n g e n dof-lif e ca ncer car e: a retr os pecti ve c e ns us s ur ve y. Palliat Me d. 2 0 1 8; 3 2: 1 6 0 5 – 1 4. 1 6. Hir o o ka K, Ot a ni H, M orit a T, Mi ura T, F u ka h ori H, A o y a ma M, et al. E n dof-lif e e x p eri e n c es of f a mil y c ar e gi v ers of dec ease d pati e nts wit h ca ncer: a nati o nwi d e s ur ve y. Ps yc h o o ncology. 2018;27:272–8. 1 7. Ull gr e n H, Tsitsi T, P a p asta vr o u E, C harala m b o us A. H o w f a mil y c ar e gi v ers of c a n c er p atie nts m a n a g e s y m pt o ms at h o me: a s yste mati c re vi e w. I nt J N urs St u d. 2 0 1 8; 8 5: 6 8 – 7 9. 1 8. Sc h ulz R, Bea c h S R. Care gi vi n g as a ris k fact or f or m ortalit y: t he care gi ver h ealt h effects st u d y. J A M A. 1 9 9 9; 2 8 2: 2 2 1 5– 9. 1 9. Sc h ulz R, Bea c h S R, Li n d B, Martire L M, Z da ni u k B, Hirsc h C, et al. I n v ol ve m e nt i n c are gi vi n g a n d a dj ust me nt t o d eat h of a s p o us e: fi n di n gs fr o m t he c ar e gi v er h e alt h eff e cts st u d y. J A M A. 2 0 0 1; 2 8 5: 3 1 2 3– 9. 2 0. Glajc he n M, H o mel P, Ts oi C Y, C h a n S, P orte n o y R. De velo p me nt a n d v ali d ati o n of t he Brief Assess me nt S cale f or Car egi vers i n C hi nese. J Palliat M e d. 2 0 1 3; 1 6: 1 3 9 4 – 4 0 2. 2 1. Si m o ns G F, F e n ni g C D. Et h n ol o g u e ®: L a n g u a g es of t h e Worl d. 1 2t h e d. Dall as, T X: SI L I nter nati o nal; 2 0 1 7. 2 2. C he u n g Y, T h u m b o o J, G o h C, K h o o K, C he W, Wee J. T he e q ui vale nc e a n d differ e n ce b et wee n t he E n glis h a n d C hi n ese versi o ns of t w o m aj or, ca ncer-s pecific, healt h-relate d q ualit yof-life q uesti o n n aires. Ca ncer. 2 0 0 4; 1 0 1: 2 8 7 4 – 8 0. 2 3. C he u n g Y T, Li m S R, S h we M, Ta n Y P, C ha n A. Ps yc h o metric pr o perties a n d meas ure me nt e q ui v ale n ce of t he E n glis h a n d C hi n es e v ersi o ns of t h e f u n cti o n al ass ess m e nt of c a n c er t hera p yc o g niti ve i n Asi a n patie nts wit h breast ca nc er. Val ue Healt h. 2 0 1 3; 1 6: 1 0 0 1 – 1 3. 2 0 6 Jo ur n al of P atie nt Ex perie nce 7( 2) 2 4. Re g na ult A, Her d ma n M. Usi n g q ua ntit ati v e met h o ds wit hi n t he U ni versalist m o del fra m e w or k t o e x pl ore t he cr oss-c ult ural e q ui v al e n c e of p atie nt-r e p orte d o utc o m e i nstr u m e nts. Q u al Life Res. 2 0 1 5; 2 4: 1 1 5 – 2 4. 2 5. Ta n M L, Wee H L, Lee J, Ma S, He n g D, Tai E S, et al. T he S h ort F or m 3 6 E n glis h a n d C hi nes e versi o ns were e q ui v ale nt i n a m ulti et h nic Asia n p o p ulati o n. J Cli n E pi d e mi ol. 2 0 1 3; 6 6: 7 5 9 – 6 7. 2 6. De part me nt of Statistics, Mi nistr y of Tra de & I n d ustr y, Re p u blic of Si n ga p ore. 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T he use of e x pl orat or y fact or a nal ysis i n p u blic healt h: a n ote o n par allel a nal ysis as a f a ct or r et e nti o n crit eri o n. A m J H e alt h Pr o m ot. 2 0 1 0; 2 4: 1 7 8 – 8 1. 3 4. C o h e n J. St atisti c al P o w er A n al ysis f or t h e B e h a vi or al Scie nces. 2 n d e d. Hills dale, NJ: La wr e n ce Erl ba u m; 1 9 8 8: 5 6 7. 3 5. F u k u h ara S, Bit o S, Gree n J, Hsia o A, K ur o ka wa K. Tra nslati o n, a d a ptati o n, a n d vali dati o n of t he S F3 6 Healt h S ur v e y f or use i n Ja pa n. J Cli n E pi de mi ol. 1 9 9 8; 5 1: 1 0 3 7 – 4 4. 3 6. T h u m b o o J, F o n g K Y, Ma c hi n D, C ha n S P, Le o n K H, F e n g P H, et al. A c o m m u nit ybase d st u d y of s cali n g ass u m pti o ns a n d c o nstr uct v ali dit y of t h e E n glis h ( U K) a n d C hi n ese ( H K) S F3 6 i n Si n ga p ore. Q ual Life Res. 2 0 0 1; 1 0: 1 7 5 – 8 8. 3 7. Ware J E Jr, K osi ns ki M, Ga n de k B, Aar o ns o n N K, A p ol o ne G, Bec h P, et al. T he fa ct or str u ct ure of t he S F3 6 Healt h S ur ve y i n 1 0 c o u ntries: res ults fr o m t he I Q O L A Pr oject. I nter n ati o nal Q u alit y of Lif e Ass ess m e nt. J Cli n E pi d e mi ol. 1 9 9 8; 5 1: 1 1 5 9 – 6 5. A ut h o r Bi o g r a pi es Gr ace Meij u a n Ya n g is a palli ati ve car e p h ysicia n w h o is als o d oi n g healt h s er vic es r esearc h. S hirl y n H uiS h a n N e o is a palliati ve care p h ysicia n w h o is als o d oi n g healt h s er vic es r esearc h. Ire n e Te o is a cli nic al ps yc h ol o gist d oi n g h ealt h ser vices rese arc h. Ge o k Li n g Le e is a res earc her wit h pr e vi o us e x perie nc e i n s ocial w or k. J uli a n T h u m b o o is a r h e u mat ol o gist w h o d oes res earc h i n s yst e mi c l u p us er yt h e m at os us, ost e o art hritis a n d p ati e nt r e p ort e d o utc o mes. J o h n C hi a is a me dical o nc ol o gist. A n nie L a u is a w ar d sister i n t he o nc ol o g y i n pati e nt war d. A u dre y K o h is researc h c o or di nat or i n p alliati v e care. De br a Q u is a se ni or rese arc h c o or di nat or i n palliati ve car e. Willi a m Wai L a m C he is a tra nslat or a n d i nter pr eter. H w ee Li n We e is a res earc her i n p har ma c o ec o n o mics a n d o ut c o me rese arc h, i n partic ular, c osteffecti v e ness a nal ysis of p har mac e uticals, p h ar mac o g e netic tests a n d healt h s er vic es i n t he areas of t y p e 2 dia betes mellit us, c ol orect al ca nc er a n d br east ca ncer. M yr a Gl ajc he n is cli nicia n, e d ucat or a n d resear c her i n h os pice a n d palliati ve care, wit h a s pecial i nterest i n t he fiel d of care gi vi n g. Yi n B u n C h e u n g is a p ae di atri c e pi d e mi ol o gist a n d m e di c al statisti cia n. Y a ng et al 2 0 7