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
• 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

QI , DQOL S

– i.e . DL

QI , DQOL S

• Dise ase Spe c ific

– i.e . ME

L ASQOL , Qo L I AD

What’s the Pr

• ble m
• Altho ug h the re a re a va rie ty o f q ua lity
• 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

fr e que ntly use d QOLinstrume nts in AD

• 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 inla y a nd Dr. T . Sc ha e fe r Pro f. A.Y. F inla y a nd Dr. T . 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

• 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

• pe 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

• Clinic a l r

e se a r c h: use a c o mb ina tio n o f

g e ne ric a nd de rma to lo g y-spe c ific instrume nts

• Clinic a l pr

a c tic e : Use de rma to lo g y-spe c ific

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

• f 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, NOTfo 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

• Inte r

nal c onsiste nc y: T

he de g re e o f inte rre la te dne ss a mo ng the 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

• Me asur

e me nt e r r

• r

: T

he syste ma tic a nd ra ndo m e rro r o f a 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

he de g re e to whic h the c o nte nt o f a n HR-PRO

• Conte nt validity: T

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

• Constr

uc t validity: T

he de g re e to whic h the sc o re s o f a n HR-PRO instrume nt a re c o nsiste nt with hypo the se s

• Cr

ite r ion validity: T

he de g re e to whic h the sc o re s o f a n HR-PRO 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

• Inte r

pr e tability: T

he de g re e to whic h o ne c a n a ssig n q ua lita tive 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

–

L it Se ar c h 1: Ato pic De rma titis AND Qua lity o f L

ife

• 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

–

L it Se ar c h 2: Ato pic De rma titis AND Qua lity o f L

ife AND

–

L it Se ar c h 2: Ato pic De rma titis AND Qua lity o f L

ife AND 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

• ac 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

• rm-36 He a lth Surve y (SF
• 36)
• De rmatology Spe c ific :

– De rma to lo g y L

ife Qua lity I nde x (DL QI )

– De rma to lo g y L

ife Qua lity I nde x (DL 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

• 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 ic Ge ne r 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 unc tio ning F unc tio ning

• Pr
• s

– 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

Me dic al Outc ome s Study Short F

• rm- 36 He alth Surve y (SF
• 36)
• De sc r

iption

–

Mo st c o mmo nly use d g e ne ric HRQOLinstrume nt

–

36 ite ms

–

8 d o ma ins: physic a l func tio ning , ro le limita tio ns d ue to physic a l pro b le ms, b o d ily pa in, g e ne ra l he a lth pe rc e ptio ns, vita lity, so c ia l func tio ning , ro le limita tio ns d ue to e mo tio na l pro b le ms a nd me nta l he a lth

–

Physic a l Co mpo ne nt Sc o re (PCS) a nd Me nta l Co mpo ne nt Sc o re (MCS)

–

T

• ta l sc o re fro m 0 (wo rst) -100 (b e st)
• Pr
• s
• Pr
• s

–

Inte rna lc o nsiste nc y, te st/ re te st re lia b ility, c o nstruc t va lid ity a nd re spo nsive ne ss ha ve b e e n te ste d (no t a ll in AD pa tie nts)

–

In AD, c o nstruc t va lid ity ha s b e e n te ste d , MCS c o rre la te s with d ise a se se ve rity (E ASIa nd SCORAD)

–

Also in AD, +/ - Re spo nsive ne ss

• Cons

–

T a ke s 5 minute s to c o mple te (sho rte r ve rsio ns e xist SF

• 12, 8 a nd 6D)

–

PCS d o e s no t c o rre la te with d ise a se se ve rity (no t se nsitive to physic a l d isa b ility c a use d b y AD)

De r matology Spe c ific De r matology Spe c ific HR- QOL Asse ssme nts

De r ma tology L ife Quality Inde x (DL QI)

• De sc r

iption

–

Mo st c o mmo nly use d QOLto o l in d e rma to lo g y

–

10 ite ms whic h fo c us o n 6 d ime nsio ns: ‘ sympto ms’ , ‘ d a ily a c tivitie s’ , ‘ le isure ’ , ‘ wo rk’ , ‘ pe rso na l re la tio nships’ a nd ‘ tre a tme nt.’

–

T

• ta l sc o re b e twe e n 0 (b e st) a nd 30 (wo rst)
• Pr
• s

–

Inte rna lc o nsiste nc y a nd te st/ re te st re lia b ility, c o nstruc t va lid ity, re spo nsive ne ss a nd inte rpre ta b ility ha ve b e e n te ste d (no t a ll in AD) Re spo nsive ne ss a nd c o nstruc t va lid ity te ste d in AD (Co rre la te s with d ise a se

–

Re spo nsive ne ss a nd c o nstruc t va lid ity te ste d in AD (Co rre la te s with d ise a se se ve rity, E ASI, SCORAD)

–

T a ke s 2 minute s to c o mple te

• Cons

–

Ma y b e g e nd e r d iffe re nc e s (so me sc o re s c o rre la te mo re fo r wo me n tha n me n mo stly in re g a rd s to visib le d ise a se )

–

Ne w a na lysis ha s shown the r e ma y be misfitting ite ms, diffe r e ntia l ite m func tioning by dise a se , a g e a nd g e nde r , disor de r e d r e sponse thr e shold a nd ina de qua te me a sur e me nt of mild dise a se

Childre n’s De r ma tology L ife Quality Inde x (CDL QI)

• De sc r

iption

– 10 writte n q ue stio ns, e a c h with fo ur po ssib le

re plie s sc o re d 0 to 3

– Ove ra ll sc o re o f 0 (b e st) 30 (wo rst)

• Pr
• s

Re lia b ility, c o nte nt va lidity a nd re spo nsive ne ss

– Re lia b ility, c o nte nt va lidity a nd re spo nsive ne ss

ha ve b e e n te ste d

– T

a ke s a ppro xima te ly 2 minute s to c o mple te

– Ne w pic to ria l ve rsio n is a va ila b le (mo re c hild

frie ndly)

• Cons

– Co rre la tio n with dise a se se ve rity is c o ntro ve rsia l

Skinde x- 29

• De sc ription

– 29 ite ms – Multi-dime nsio na l QOLinstrume nt plus o ne e xtra ite m

• n a dve rse e ffe c ts o f tre a tme nt

– T

hre e do ma ins: Sympto ms, E mo tio ns, F unc tio ning

• Pros
• Pros

– I

nte rna l c o nsiste nc y, te st/ re te st re lia b ility, c o nstruc t va lidity, c o nte nt va lidity, re spo nsive ne ss, inte rpre ta b ility we re te ste d (no t a ll in AD spe c ific a lly)

– Va lidity a nd re lia b ility ha ve b e e n te ste d in AD

• Cons

– T

a ke s 5 minute s to c o mple te , sho rte r ve rsio ns e xist (Skinde x-17)

Dise ase Spe c ific Dise ase Spe c ific HR- QOL Asse ssme nts

Infant’s De r ma titis Quality of L ife (IDQoL ) Inde x

• De sc ription

– Specifically suited to children aged ≤ 4 – 10 q ue stio ns a ddre ssing sympto ms a nd diffic ultie s with

mo o d, sle e p (2 q ue stio ns), pla y, fa mily a c tivitie s, me a ltime s, tre a tme nts, dre ssing a nd b a thing

– Sc o re 0-3 fo r e a c h q ue stio n, o ve ra ll sc o re 0 (b e st) to 30

(wo rst) (wo rst)

– Ma ximum o ve ra ll sc o re is 30 (hig he r sc o re s re fle c ting

g re a te rimpa irme nt)

• Pros

– T

e st/ re -te st re lia b ility ha s b e e n te ste d

– +/ - Re spo nsive ne ss – T

a ke s a ppro xima te ly 2 minute s to c o mple te

• Cons

– Co rre la tio n with dise a se se ve rity is c o ntro ve rsia l

Childhood Atopic De r ma titis Impac t Sc ale (CADIS)

• De sc ription

– Spe c ific fo r c hildre n yo ung e r tha n 6 ye a rs a nd the irpa re nts – 45 ite ms – Sc o re 0-180 – 5 do ma ins: Child Sympto ms, Child Ac tivity L

imita tio ns a nd Be ha vio r, F a mily a nd So c ia l F unc tio n, Pa re nt Sle e p, a nd Pa re nt E mo tio ns Pa re nt E mo tio ns

• Pros

– I

nte rna l c o nsiste nc y, c o nte nt va lidity, te st-re te st re lia b ility, c o nc urre nt va lidity, disc rimina tive va lidity, re spo nsive ne ss ha ve b e e n te ste d

• Cons

– T

a ke s 6 minute s to c o mple te (sho rte r ve rsio n wa s use d in a n I ta lia n study a nd sho we d g o o d psyc ho me tric pro pe rtie s)

Quality of L ife Inde x for Atopic De r ma titis (QoL IAD)

• De sc r

iption

– Cre a te d using a ne e ds b a se d mo de l – 25 ite ms – Sc o re ra ng e s fro m 0 (b e st)-25 (wo rst)

• Pr
• s
• Pr
• s

– T

e st/ re te st re lia b ility, inte rna l c o nsiste nc y, c o nstruc t va lidity ha ve b e e n te ste d

– T

a ke s a ppro xima te ly 2 minute s to c o mple te

• Cons

– Did no t ha ve a g o o d c o e ffic ie nt fo rte st-re te st

re lia b ility o r c o rre la tio n with pa re nt pe rc e ive d se ve rity in pa tie nts po o le d fro m Ne the rla nds

De r ma titis F a mily Impac t (DF I)

• De sc ription

– One -pa g e q ue stio nna ire me a sure s e xte nt to whic h c hild

with AD a ffe c ts QOLo f fa mily

– 10 ite ms – E

a c h q ue stio n ha s fo ur re spo nse s: no t a t a ll = 0, a little = 1, a lo t = 2 a nd ve ry muc h = 3.

– Ove ra ll sc o re 0 (b e st) to 30 (wo rst) – Ove ra ll sc o re 0 (b e st) to 30 (wo rst)

• Pros

– Re lia b ility, va lidity (c o nstruc t va lidity) a nd re spo nsive ne ss

ha ve b e e n te ste d

– Co rre la te s with E

ASI

– T

a ke s 2 minute s to c o mple te

• Cons

– Co rre la tio n with SCORAD is c o ntro ve rsia l

Re fe r e nc e s

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de rma titis. I nt J De rma to l. 2010 Se p;49(9):1063-7.

• Alva re ng a T

M, Ca lde ira AP. Qua lity o f life in pe dia tric pa tie nts with a to pic de rma titis. J Pe dia tr (Rio J). 2009 Se p- Oc t;85(5):415-20.

• Aug ustin M, We nning e r K

, Amo n U, Sc hro th MJ, K üste r W, e t a l. Ge rma n a da pta tio n o f the Skinde x-29 q ue stio nna ire o n q ua lity

• f life in de rma to lo g y: va lida tio n a nd c linic a l re sults. De rma to lo g y. 2004;209(1):14-20.
• Azia h MS, Ro sna h T

, Ma rdzia h A, No rzila MZ. Childho o d a to pic de rma titis: a me a sure me nt o f q ua lity o f life a nd fa mily impa c t. Me d J Ma la ysia . 2002 Se p;57(3):329-39.

• Be a ttie PE

, L e wis-Jo ne s MS. An a udit o f the impa c t o f a c o nsulta tio n with a pa e dia tric de rma to lo g y te a m o n q ua lity o f life in infa nts with a to pic e c ze ma a nd the ir fa milie s: furthe r va lida tio n o f the I nfa nts' De rma titis Qua lity o f L ife I nde x a nd De rma titis F a mily I mpa c t sc o re . Br J De rma to l. 2006 De c ;155(6):1249-55.

• Be n-Ga shir MA, Se e d PT

, Ha y RJ. Are q ua lity o f fa mily life a nd dise a se se ve rity re la te d in c hildho o d a to pic de rma titis? J E ur Ac a d De rma to l Ve ne re o l. 2002 Se p;16(5):455-62.

• Be n-Ga shir MA, Se e d PT

, Ha y RJ. Qua lity o f life a nd dise a se se ve rity a re c o rre la te d in c hildre n with a to pic de rma titis. Br J De rma to l. 2004 F e b ;150(2):284-90.

• Bra zie r JE

, Ha rpe r R, Jo ne s NM, O'Ca tha in A, T ho ma s K J, e t a l. Va lida ting the SF

• 36 he a lth surve y q ue stio nna ire : ne w o utc o me
• Bra zie r JE

, Ha rpe r R, Jo ne s NM, O'Ca tha in A, T ho ma s K J, e t a l. Va lida ting the SF

• 36 he a lth surve y q ue stio nna ire : ne w o utc o me

me a sure fo r prima ry c a re . BMJ. 1992 Jul 18;305(6846):160-4.

• Cha mlin SL

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• Cha mlin SL

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• Che rnysho v PV. Ge nde r diffe re nc e s in he a lth-re la te d a nd fa mily q ua lity o f life in yo ung c hildre n with a to pic de rma titis. I

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• Chre n MM, L

a se k RJ, F lo c ke SA, Zyza nski SJ. I mpro ve d disc rimina tive a nd e va lua tive c a pa b ility o f a re fine d ve rsio n o f Skinde x, a q ua lity-o f-life instrume nt fo r pa tie nts with skin dise a se s. Arc h De rma to l. 1997 No v;133(11):1433-40.

• Chre n MM, L

a se k RJ, Quinn L M, Co vinsky K E . Co nve rg e nt a nd disc rimina nt va lidity o f a g e ne ric a nd a dise a se -spe c ific instrume nt to me a sure q ua lity o f life in pa tie nts with skin dise a se . J I nve st De rma to l. 1997 Ja n;108(1):103-7.

• Chre n MM, L

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• Co g hi S, Bo rto le tto MC, Sa mpa io SA, Andra de Junio r HF

, Ao ki V. Qua lity o f life is se ve re ly c o mpro mise d in a dult pa tie nts with a to pic de rma titis in Bra zil, e spe c ia lly due to me nta l c o mpo ne nts. Clinic s (Sa o Pa ulo ). 2007 Jun;62(3):235-42.

Re fe r e nc e s Cont.

• Dra g o L

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