Quality of L ife Me a sure s in Atopic De r ma titis Clinic a l Ca - PowerPoint PPT Presentation

Quality of L ife Me a sure s in Atopic De r ma titis Clinic a l Ca re and Re se arc h and Re se arc h She hla Adma ni, MD Ma g da le ne Do hil, MD Ra dy Childre n’ s Ho spita l Unive rsity o f Ca lifo rnia , Sa n Die g o

HOME Cor e Me asur e s • Sig ns • Sympto ms • L o ng te rm c o ntro l • Qua lity o f life • I nitia lly it wa s unc le a r whe the r o r no t QOL sho uld b e inc lude d in the c o re se t o f do ma ins • At the HOMEI Ic o nse nsus me e ting in Amste rda m in June 2011, c o re me a sure s we re fina lize d a nd inc lude d QOL

He alth Re late d Quality of L ife • A patie nt’s e valuation o f the impa c t o f dise a se a nd tre a tme nt o n the ir physic a l, psyc ho lo g ic a l a nd so c ia l func tio ning a nd we ll-b e ing • Ofte n a se c o nda ry o utc o me me a sure a nd is inc re a sing ly b e c o ming a prima ry e ndpo int • QOLa sse ssme nts will b e inte g ra te d in me a suring the q ua lity o f pro vide d c a re

QOLAsse ssme nts • Ge ne r ic He alth – i.e . SF -36, NHP • De r matology Spe c ific – i.e . DL – i.e . DL QI QI , DQOL , DQOL S S • Dise ase Spe c ific – i.e . ME L ASQOL , Qo L I AD

What’s the Pr oble m • Altho ug h the re a re a va rie ty o f q ua lity o f life me a sure s use d in a to pic de rma titis re se a rc h, no syste ma tic re vie w o f the se a sse ssme nts ha s ye t b e e n pe rfo rme d b e e n pe rfo rme d • Bo th g e ne ric a nd dise a se spe c ific a sse ssme nts e xist a nd it is unc le a r whic h a sse ssme nts a nd ho w ma ny sho uld ro utine ly b e use d

Our Goal • Pro vide a foc use d a na lysis o f the c o nte nt a nd me a sure me nt pro pe rtie s o f the most e que ntly use d QOLinstrume nts in AD fr • Using info rma tio n re g a rding psyc ho me tric • Using info rma tio n re g a rding psyc ho me tric pro pe rtie s a nd instrume nt c ha ra c te ristic s, fo rmula te re c o mme nda tio ns fo r the mo st a ppro pria te QOLsc a le (s) fo r c linic a l c a re a nd re se a rc h

E ADV T askfor c e on QOL • T he E uro pe a n Ac a de my fo r De rma to lo g y a nd Ve ne re o lo g y (E ADV) T a skfo rc e o n Qua lity o f L ife wa s e sta b lishe d in 2008 b y Pro f. A.Y. F Pro f. A.Y. F inla y a nd Dr. T inla y a nd Dr. T . Sc ha e fe r . Sc ha e fe r • T his ta skfo rc e e nc o ura g e s the use o f QOL instrume nts in c linic a l c a re a nd re se a rc h a nd pro vide s info rma tio n o n the psyc ho me tric c ha ra c te ristic s o f the se instrume nts

Psyc home tr ic Char ac te r istic s Sc ale struc ture : T he e xte nt to whic h ite ms b e lo ng • to g e the r, re pre se nt a pa rtic ula r do ma in o f a c e rta in c o nstruc t Re liability: Me a sure me nt pre c isio n • Validity: T he de g re e to whic h the instrume nt • a c tua lly me a sure s wha t it is inte nde d to me a sure a c tua lly me a sure s wha t it is inte nde d to me a sure Re sponsive ne ss: T he e xte nt to whic h the sc o re o f • a n instrume nt c ha ng e s a s a pa tie nt’ s c o nditio n c ha ng e s o ve r time Inte rpre tability: T he a b ility to inte rpre t the • sig nific a nc e o f the re sults o f a n instrume nt in te rms o f a q ua lita tive me a ning to q ua ntita tive re sults

How to Choose a QOL Asse ssme nt Jour na l of the E ur ope a n Ac a de my of De r ma tolog y a nd Ve ne r e olog y 9 JAN 2013 DOI: 10.1111/ jdv.12090 http:/ / o nline lib ra ry.wile y.c o m/ do i/ 10.1111/ jdv.12090/ full# jdv12090-fig -0001

E ADV Re c omme ndations c h: use a c o mb ina tio n o f • Clinic a l r e se a r g e ne ric a nd de rma to lo g y-spe c ific instrume nts a c tic e : Use de rma to lo g y-spe c ific • Clinic a l pr instrume nt a s g e ne ric instrume nts mig ht fa il in the a sse ssme nt o f impo rta nt de rma to lo g y- the a sse ssme nt o f impo rta nt de rma to lo g y- spe c ific a spe c ts • De ve loping a ne w instr ume nt should not be a pr ior ity a s this is diffic ult, time c onsuming a nd doe s not c ontr ibute to the body of knowle dg e of e xisting instr ume nts

Conse nsus- base d Standa rds for the se le c tion of he alth Me a sure me nt Instrume nts (COSMIN) • Che c klist fo r e va lua ting the q ua lity o f a • Che c klist fo r e va lua ting the q ua lity o f a study o n me a sure me nt pro pe rtie s o f a HR-PRO instrume nt, NOT fo r e va lua ting the q ua lity o f the instrume nt itse lf • I f the re sults o f hig h q ua lity studie s diffe r fro m the re sults o f lo w-q ua lity studie s, this c a n indic a te b ia s

COSMIN Che c klist nal c onsiste nc y: T he de g re e o f inte rre la te dne ss a mo ng the Inte r • ite ms Re liability: T he e xte nt to whic h sc o re s fo r pa tie nts who ha ve no t • c ha ng e d a re the sa me fo r re pe a te d me a sure me nt unde r se ve ra l c o nditio ns : T he syste ma tic a nd ra ndo m e rro r o f a Me asur e me nt e r r or • pa tie nt’ s sc o re tha t is no t a ttrib ute d to true c ha ng e s in the c o nstruc t to b e me a sure d Conte nt validity: T Conte nt validity: T he de g re e to whic h the c o nte nt o f a n HR-PRO he de g re e to whic h the c o nte nt o f a n HR-PRO • • instrume nt is a n a de q ua te re fle c tio n o f the c o nstruc t to b e me a sure d uc t validity: T he de g re e to whic h the sc o re s o f a n HR-PRO Constr • instrume nt a re c o nsiste nt with hypo the se s ion validity: T he de g re e to whic h the sc o re s o f a n HR-PRO Cr ite r • instrume nt a re a n a de q ua te re fle c tio n o f a ‘ ‘ g o ld sta nda rd’ ’ Re sponsive ne ss: T he a b ility o f a n HR-PRO instrume nt to de te c t • c ha ng e o ve rtime in the c o nstruc t to b e me a sure d e tability: T he de g re e to whic h o ne c a n a ssig n q ua lita tive Inte r pr • me a ning to a n instrume nt’ s q ua ntita tive sc o re s o r c ha ng e in sc o re s

How We Arrive d at Our Short L ist Using the E ADV T a skfo rc e re c o mme nda tio ns a nd the COSMI N • c he c klist a s a g uide line , we sta rte d with a b ro a d lite ra ture se a rc h to find the mo st c o mmo nly use d QOLa sse ssme nts in AD lite ra ture c h 1: Ato pic De rma titis AND Qua lity o f L ife L it Se ar – We the n pe rfo rme d a mo re syste ma tic se a rc h to find a rtic le s • e va lua ting the psyc ho me tric pro pe rtie s o f the se QOLto o ls c h 2: Ato pic De rma titis AND Qua lity o f L c h 2: Ato pic De rma titis AND Qua lity o f L ife AND ife AND L L it Se ar it Se ar – – Que stio nna ire OR I nstrume nt OR T e st OR I nve nto ry OR Sc a le OR I nde x OR Surve y I n a dditio n, we se a rc he d fo r so me o f the se le c te d a sse ssme nts • b y na me to re vie w the irva lida tio n We c hose to take a mor e pr agmatic appr oac h and foc us on • asse ssme nts that ar e alr e ady validate d and c ommonly use d as the se will be mor e like ly to be unive r sally ac c e pte d and put into both c linic al c ar e and r e se ar c h pr ac tic e s

Most Commonly Use d QOL Asse ssme nts in AD Ge ne ric : • – E uro Qo l Qua lity o f L ife Sc a le (E Q-5D) – Me dic a l Outc o me s Sho rt F o rm-36 He a lth Surve y (SF - 36) De rmatology Spe c ific : • – De rma to lo g y L – De rma to lo g y L ife Qua lity I ife Qua lity I nde x (DL nde x (DL QI QI ) ) – Childre n’ s De rma to lo g y L ife Qua lity I nde x (CDL QI ) – Skinde x – 29 Dise ase Spe c ific : • – I nfa nt’ s De rma titis Qua lity o f L ife (I DQo L ) I nde x – Childho o d Ato pic De rma titis I mpa c t Sc a le (CADI S) – Qua lity o f L ife I nde x fo r Ato pic De rma titis (Qo L I AD) – De rma titis F a mily I mpa c t (DF I ) [F a mily]

T able 2. Quality of life sc ale s. Re ha l B, Armstro ng A (2011) He a lth Outc o me Me a sure s in Ato pic De rma titis: A Syste ma tic Re vie w o f T re nds in Dise a se Se ve rity a nd Qua lity-o f-L ife Instrume nts 1985–2010. PL o S ONE6(4): e 17520. do i:10.1371/ jo urna l.po ne .0017520 http:/ / www.plo so ne .o rg / a rtic le / info :do i/ 10.1371/ jo urna l.po ne .0017520

Ge ne r Ge ne r ic ic HR- QOL Asse ssme nts

E uroQol Quality of L ife Sc ale (E Q- 5D) • De sc r iption – F ive ite ms, inc luding a visua l a na lo g sc a le – T hre e do ma ins: Physic a l, Me nta l a nd So c ia l F F unc tio ning unc tio ning • Pr os – T a ke s o ne minute to c o mple te • Cons – No t ve ry se nsitive to diffe re nc e s a sso c ia te d with mino r mo rb idity suc h a s skin dise a se s