Evaluation of content on EQ-5D as compared to disease-specificutility measures

Fang-Ju Lin • Louise Longworth • A. Simon Pickard

Accepted: 15 May 2012 / Published online: 23 June 2012

� Springer Science+Business Media B.V. 2012

Abstract

Purpose The goal of this study was to appraise the extent

of unique content on disease-specific preference-based

measures (DSPMs) when contrasted with the EQ-5D using

published studies and to inform whether EQ-5D could be

inadequate as a utility measure in its content coverage for a

given disease-specific application.

Methods A structured search of published literature was

performed using PubMed and EMBASE/Medline database

from Jan 1, 1990 to Mar 31, 2011. Articles were eligible for

inclusion if algorithms were developed to convert compo-

nents from disease-specific measures into utility scores.

Results Of 1,029 articles identified, 50 studies satisfied

the inclusion criteria. The most frequent conditions where

DSPMs were developed included cancer (12 studies),

coronary artery disease (4 studies), osteoarthritis, rheuma-

toid arthritis (3 studies of each), obesity, and stroke (2

studies of each). Most studies involved mapping items or

scores from disease-specific non-preference-based mea-

sures onto a preference-based measure of health such as the

EQ-5D. A substantial number of DSPMs appeared to

include unique content not covered by EQ-5D dimensions.

Conclusions Several conditions were identified as

potential areas where the richness of the EQ-5D descriptive

system could be enhanced. It is yet unclear whether added

dimension(s) would contribute unique explained variance

to a utility score. Given the resources required to rigorously

develop a utility measure, the need for such measures

should be carefully vetted.

Keywords Disease-specific measures � EQ-5D � Utility �Preferences � Mapping

Introduction

Cost-utility analysis is now regularly used to assess the

benefits of health care interventions and to inform resource

allocation. The ‘‘utility’’ component of cost-utility analyses

is often obtained through the use of generic preference-

based measures of health-related quality of life (HRQoL).

Of the available measures, the EQ-5D has become one of

the most commonly used generic preference-based mea-

sures in economic evaluation [1]. The EQ-5D comprises

five dimensions of health (mobility, self-care, usual activ-

ities, pain/discomfort, and anxiety/depression). The EQ-

5D-3L has three levels of severity on each dimension of

health [2], and a new 5L version has 5 five levels on each

dimension [3].

Generic and disease-specific measures of health that

were not originally developed with the intention of gen-

erating utility scores have recently begun to be adapted for

that purpose. One of the first incarnations was the SF-6D,

where Brazier et al. [4, 5] selected items from the SF-36

and developed a set of utility weights for a subset of items.

Since then, the development of utility algorithms for dis-

ease-specific preference-based measures (DSPMs) has

become increasingly popular. There are currently two main

ways in which DSPMs have been established for utility

measurement. Firstly, DSPMs can be obtained from

F.-J. Lin � A. S. Pickard (&)

Center for Pharmacoeconomic Research and Department of

Pharmacy Practice and Pharmacy Administration, University of

Illinois at Chicago, 833 South Wood St., Room 164, M/C 886,

Chicago, IL 60612, USA

e-mail: pickard1@uic.edu

L. Longworth

Health Economics Research Group, Brunel University,

London, UK

123

Qual Life Res (2013) 22:853–874

DOI 10.1007/s11136-012-0207-6

‘‘mapping’’ or ‘‘cross-walking’’ between the disease-spe-

cific measure (DSM) and a preference-based quality of life

instrument [6]. This approach requires both measures to be

completed by a relevant group of patients, and econometric

analysis then performed to generate algorithms to predict

the utility score or responses to the preference-based

instrument. Secondly, DSPMs can also be generated by

directly obtaining utility valuations for health states

described by the DSM. As DSMs often include a large

number of attributes or levels, it is often necessary to

specify a subgroup of attributes to be valued. Such studies

can be conducted by eliciting values from patients or the

general population depending upon the desired perspective.

Although ‘‘mapping’’ is sometimes used with ambiguity

among the literature, we here define the term to refer only

to the first approach mentioned above, to distinguish it

from the approach of direct valuation.

Adaptations of disease-specific measures to generate

utility scores are increasingly of interest to health care

stakeholders in both industry and government for a number

of reasons. Such algorithms can facilitate the generation of

utility scores when a utility measure was not incorporated

originally in a study, because of either lack of foresight or

excessive respondent burden. In addition, disease-specific

measures, as compared to generic measures, may demon-

strate better ability to discriminate between comparison

groups and respond to changes over time [7]. There is the

perception that some generic instruments, such as the

EQ-5D, may provide inadequate coverage of certain

dimensions of health that are important, and may change,

in patients with a given condition. However, the mapping

function or scoring algorithm can still be deficient in

coverage, and a directly derived DSPM can potentially

exaggerate disease-specific health problems due to focus-

ing and hence limit the comparability of utility values [8].

An alternative to DSPM measures is to develop items

that ‘‘bolt-on’’ to the core items or dimensions on standard

generic questionnaires that refer to condition-specific

content relevant to a particular condition. Bolt-ons (add-

ons/dimension extensions) to standard generic measures,

though require further research to establish the relative

value, can potentially enhance the precision and respon-

siveness of the measurement. Recently, there have been

attempts to investigate health conditions or dimensions

where bolt-ons to EQ-5D can potentially be helpful.

Although the EQ-5D has the smallest number of dimen-

sions of the main generic preference-based measures,

efforts to identify inadequate coverage of health dimen-

sions by the EQ-5D have met with mixed results. Fur-

thermore, there is no clearly established methodology for

integrating new items/dimensions into an existing algo-

rithm, a challenge outside the scope of this paper. The

genuine need for additional dimensions, and what they

should be, is not clear, even for conditions where DSPM

have been developed. Recently, Brazier et al. [3] reviewed

the use of mapping from non-preference-based measures to

generic preference-based measures and found that most

mapping had been conducted between alternative generic

measures of HRQoL, rather than from disease-specific

measures. The authors concluded that while the approach

was feasible, the validity of the models in terms of good-

ness of fit and error of prediction was highly variable and

will be less desirable when the content of the measures has

less overlap [6].

This study focuses on the literature on disease-specific

mapping studies and disease-specific preference-based

measures, to understand what content is similar to, and

different from, the EQ-5D and to identify potential con-

ditions or dimensions of health where ‘‘bolt-ons’’ might be

appropriate. Through this synthesis of the literature, we

aimed to provide an initial step in examining the possible

candidate conditions in which bolt-ons to EQ-5D may be

considered. In order to accomplish this, we examined all

literature in which disease-specific measures have been

linked to generic utility measures.

Objectives

This study had two specific aims as follows: (1) to describe

the studies that have attempted to map DSMs onto generic

preference-based measures to generate utility scores or

which have developed preference-based measures from

condition-specific measures; (2) to examine and qualita-

tively appraise the face validity of the dimensional cover-

age/overlap of the generic EQ-5D with the items/subscales

from the DSPM.

Methods

Our approach was to conduct a structured review of the

literature in order to identify published literature where

disease-specific measures were adapted to enable the gen-

eration of utility scores. Upon identification of those

studies, which is described below, data were abstracted

from each study related to the item/dimensional content of

the DSPM. Then, we compared and contrasted the DSPM

content with the content of the core dimensions of the

EQ-5D through qualitative appraisal.

Literature search

A search of published literature was performed using

PubMed and EMBASE/Medline database from Jan 1, 1990

to Mar 31, 2011. The search was limited to peer-reviewed

854 Qual Life Res (2013) 22:853–874

123

journals and articles published in English. The following

search strategy was executed in PubMed: (1) utility[All

Fields] OR utilities[All Fields] AND (‘‘quality of life’’

[MeSH Terms] OR ‘‘quality of life’’[All Fields]) AND

(mapping[All Fields] OR estimating[All Fields] OR esti-

mation[All Fields] OR ‘‘regression analysis’’[MeSH

Terms]) AND English[lang]; (2) utility[All Fields] OR

utilities[All Fields] AND (‘‘disease specific’’[All Fields]

OR ‘‘condition specific’’[All Fields]). We also performed a

similar search in an EMBASE and Medline combined

database as well, with the search strategy modified

accordingly to include subject headings specific to that

database. Abstracts were carefully reviewed, and full texts

were retrieved if further examination of eligibility was

needed. Articles were eligible for inclusion if preference-

based scoring functions/algorithms were developed for an

existing disease-specific measure. Studies were excluded if

(1) articles focused on development or improvement of a

disease-specific utility instrument; (2) regression analyses

were performed only to examine the correlation between

utility scores and disease-specific measures, without con-

structing algorithms; (3) studies generated utility scores by

anchoring disease-specific measurement data with previ-

ously derived health utilities in the literature. In addition,

reference lists from these articles and the author’s library

were hand-searched to identify additional articles.

The data abstraction included: (1) the targeted disease/

condition, dimensional content and number of items on the

parent DSM; (2) the evaluation techniques used to elicit

preferences; (3) the patient sample used as the basis for the

mapping/valuation study; (4) the range of utility scores

predicted by the subset of the items selected for the DSPM

(preferred model if identified by authors); (5) reported

model goodness of fit (R2 and root mean squared error

[RMSE], mean absolute error [MAE] or mean percentage

error), in order to relate the proportion of variation in utility

scores explained by DSPMs and model performance. We

also reviewed the content of DSMs and DSPMs, and

compared the core dimensions covered by DSPMs and EQ-

5D. One of the authors conducted the abstract review and

data extraction, while the extent of dimension overlap in

DSPMs and EQ-5D was assessed by two reviewers (FJL,

ASP), according to the detailed items/questions described

in DSMs. Any disagreements were resolved by consensus.

Results

A total of 1,029 articles were identified by the electronic

search of databases, with 694 from PubMed and 913 from

EMBASE/Medline database (Fig. 1). After screening the

abstracts and/or the full text of papers, 47 papers were

included in the review. Among the 47 papers, 25 came

from both searches in PubMed and EMBASE/Medline

database, while 10 and 12 were only found in PubMed or

EMBASE/Medline search, respectively. Three additional

papers which met our selection criteria were identified by

reviewing the reference lists from these included articles

[9–11]. Therefore, 50 articles were included in total

(Tables 1, 2, 3).

As shown in Table 1, linkage of disease-specific mea-

sures to utility measures has been explored in a variety of

illnesses or conditions. The most frequently studied disease

was cancer (12 studies), followed by coronary artery dis-

ease (4 studies), osteoarthritis, rheumatoid arthritis (3

studies of each), obesity, and stroke (2 studies of each).

Other studied diseases or conditions include age-related

macular degeneration, atopic dermatitis, chronic obstruc-

tive pulmonary disease exacerbation, chronic liver disease,

degenerative disk disease of cervical spine, dental health,

erectile dysfunction, flushing, inflammatory bowel disease,

menopause, mental conditions, ocular disease, otitis media,

overactive bladder, pain, Parkinson’s disease, pulmonary

hypertension, schizophrenia, sleep disorder, ulcerative

colitis, and urinary incontinence.

Based on our selection criteria, all studies involved

scoring algorithms developed to translate disease-specific

non-preference-based measure(s) of health (the ‘‘parent

measure,’’ the DSM) into at least one generic utility-based

measure (the source of preferences). Various methods were

used to develop the scoring functions for DSPMs. Many

studies performed mapping procedures by regressing

components of the DSM onto existing preference-based

measures such as EQ-5D or HUI, in order to estimate

utility scores that could be generated using the DSM. For

this approach, respondents with a given condition rated

their current health status using both the disease-specific

measure and the generic preference-based utility measure.

Typically, the mapping exercise was accomplished by

using a data set to develop a mapping function, and then,

1029 unique articles identified from PubMed and EMBASE/Medline database using keyword search

Screened by abstract review

Articles obtained: 47 Relevant citations in the articles: 3

Discrete studies identified: 50

Fig. 1 Summary of literature search

Qual Life Res (2013) 22:853–874 855

123

Ta

ble

1B

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[34]

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32

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ms

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r

pat

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856 Qual Life Res (2013) 22:853–874

123

Ta

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1co

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nu

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mea

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adia

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vas

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Soci

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(CC

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a

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ssifi

cati

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Sin

gle

item

des

crib

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sever

ity

of

angin

a(a

ngin

apai

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1

Over

all

hea

lth

rati

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5ca

tegori

es:

exce

llen

t,ver

ygood,

good,

fair

,an

dpoor

1

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lth

stat

us

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mple

self

-rat

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scal

esc

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from

0(w

ors

t)to

100

(bes

t)

1

Can

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nC

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vas

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a

Cla

ssifi

cati

on

Sin

gle

item

des

crib

ing

sever

ity

of

angin

a(a

ngin

apai

n)

1L

ongw

ort

het

al.

[40]

EQ

-5D

Map

pin

gU

KU

KP

atie

nts

had

coro

nar

y

arte

rydis

ease

of

angin

a

or

had

under

gone

pre

vio

us

revas

cula

riza

tion

pro

cedure

s

Bre

athle

ssnes

sG

rade

(BG

)S

ingle

item

des

crib

ing

sever

ity

of

angin

a(b

reat

hle

ssnes

s)

1

Sea

ttle

Angin

aQ

ues

tionnai

re

(SA

Q)

Physi

cal

lim

itat

ion,

angin

alst

abil

ity,

angin

alfr

equen

cy,

trea

tmen

t

sati

sfac

tion,

dis

ease

per

cepti

on

19

Gold

smit

het

al.

[33]

EQ

-5D

Map

pin

gU

KU

KP

atie

nts

wit

hco

ronar

y

hea

rtdis

ease

Wij

eysu

nder

a

etal

.[4

1]

EQ

-5D

Map

pin

gU

SC

anad

aP

atie

nts

wit

hco

ronar

y

hea

rtdis

ease

who

under

wen

tco

ronar

y

angio

gra

phy

Qual Life Res (2013) 22:853–874 857

123

Ta

ble

1co

nti

nu

ed

Dis

ease

/condit

ion

Par

ent

mea

sure

(DS

M)

Dim

ensi

ons

of

par

ent

mea

sure

No.

of

item

s

Publi

cati

on

refe

rence

Val

uat

ion

tech

niq

ue

Map

pin

gver

sus

dir

ect

val

uat

ion

Sourc

eof

val

ue

(countr

y)

Sourc

eof

sam

ple

(countr

y)

Sourc

eof

pre

fere

nce

s

Chro

nic

liver

dis

ease

Liv

erD

isea

seS

ym

pto

m

Index

(LD

SI)

2.0

LD

SI

mea

sure

sse

ver

ity

of

and

hin

dra

nce

from

9sy

mpto

ms:

itch

,

join

tpai

n,

pai

nin

right

upper

abdom

en,

fati

gue,

worr

yab

out

fam

ily

situ

atio

n,

dec

reas

edap

pet

ite,

dep

ress

ion,

fear

of

com

pli

cati

ons,

jaundic

e

18

Gutt

elin

get

al.

[42]

SF

-6D

Map

pin

gU

KN

ether

lands

Chro

nic

liver

dis

ease

pat

ients

6-i

tem

exte

nsi

on

The

addit

ional

6it

ems:

mem

ory

pro

ble

ms,

chan

ge

of

per

sonal

ity,

hin

dra

nce

infi

nan

cial

affa

irs,

dai

ly

tim

em

anag

emen

t,dec

reas

edse

xual

inte

rest

,dec

reas

edse

xual

acti

vit

y

6

Deg

ener

ativ

edis

k

dis

ease

(cer

vic

al

spin

e)

Cer

vic

alS

pin

eO

utc

om

es

Ques

tionnai

re(C

SO

Q)

Nec

kpai

n,

arm

/should

erpai

n,

funct

ional

dis

abil

ity,

psy

cholo

gic

dis

tres

s,physi

cal

sym

pto

ms,

hea

lth

care

uti

liza

tion

33

Skola

sky

etal

.

[43]

SF

-6D

Map

pin

gU

KU

SP

atie

nts

wit

hce

rvic

al

radic

ulo

pat

hy

or

myel

opat

hy

under

goin

g

ante

rior

cerv

ical

dec

om

pre

ssio

nan

d

fusi

on

Den

tal/

Ora

lhea

lth

Ora

lH

ealt

hIm

pac

tP

rofi

le

(OH

IP-1

4)

Funct

ional

lim

itat

ion,

physi

cal

pai

n,

psy

cholo

gic

aldis

com

fort

,physi

cal

dis

abil

ity,

psy

cholo

gic

aldis

abil

ity,

soci

aldis

abil

ity,

han

dic

ap

14

Bre

nnan

etal

.[4

4]

EQ

-5D

Map

pin

gU

KA

ust

rali

aD

enta

lpat

ients

Ere

ctil

edysf

unct

ion

Inte

rnat

ional

Index

of

Ere

ctil

eD

ysf

unct

ion

(IIE

F)

Ere

ctil

efu

nct

ion,

org

asm

icfu

nct

ion,

sexual

des

ire,

sexual

sati

sfac

tion

15

Sto

lket

al.

[12]

TT

OD

irec

tval

uat

ion

Net

her

lands

Net

her

lands

Gen

eral

popula

tion

Flu

shin

gF

lush

ing

Sym

pto

ms

Ques

tionnai

re(F

SQ

)

Sev

erit

y,

freq

uen

cy,

dura

tion,

and

both

erof

flush

ing,

slee

pdif

ficu

lty

11

Young

etal

.[1

6]

TT

OD

irec

tval

uat

ion

UK

UK

Gen

eral

popula

tion

Gro

wth

horm

one

defi

cien

cy(G

HD

)

QoL

Ass

essm

ent

of

Gro

wth

Horm

one

Defi

cien

cyin

Adult

sques

tionnai

re(Q

oL

-

AG

HD

A)

Pro

ble

ms

wit

hm

emory

and

conce

ntr

atio

n,

tire

dnes

s,te

nse

nes

s,

soci

alis

ola

tion,

self

-confi

den

ce

25

Kolt

ow

ska-

Hag

gst

rom

etal

.

[45]

EQ

-5D

Map

pin

g6

Wes

tern

Euro

pea

n

countr

ies

Sw

eden

Gen

eral

popula

tion

aged

18–85

yea

rs

Hydro

cephal

us

Hydro

cephal

us

Outc

om

e

Ques

tionnai

re(H

OQ

)

Cognit

ive,

physi

cal,

soci

al–em

oti

onal

51

Kulk

arni

[10]

HU

I2M

appin

gC

anad

aC

anad

aC

hil

dre

nw

ith

hydro

cephal

us

atte

ndin

g

outp

atie

nt

clin

ic

Infl

amm

atory

bow

el

dis

ease

(i.e

.,

Cro

hn’s

dis

ease

)

Infl

amm

atory

Bow

elD

isea

se

Ques

tionnai

re(I

BD

Q)

Bow

elsy

mpto

ms,

syst

emic

sym

pto

ms,

emoti

onal

funct

ion,

soci

alfu

nct

ion

32

Buxto

net

al.

[46]

EQ

-5D

SF

-6D

Map

pin

gU

K(E

Q-5

D);

UK

(SF

-6D

)

UK

Pat

ients

wit

hm

oder

atel

yto

sever

ely

acti

ve

Cro

hn’s

dis

ease

Cro

hn’s

Dis

ease

Act

ivit

y

Index

(CD

AI)

Item

sdes

crib

ing

sym

pto

ms

in

Cro

hn’s

dis

ease

8

Men

opau

seQ

ual

iPau

seIn

ven

tory

(QP

I)P

sych

olo

gic

al,

physi

cal,

vas

om

oto

r,

sexual

,m

enst

rual

,an

dro

gen

ic

com

pla

ints

39

Bra

zier

etal

.[1

3]

TT

OD

irec

tval

uat

ion

UK

UK

Wom

enag

ed45

to60

Men

tal

hea

lth

Gen

eral

Hea

lth

Ques

tionnai

re

(GH

Q-1

2)

Rec

ent

sym

pto

ms,

feel

ing,

beh

avio

r12

Ser

rano-A

guil

ar

etal

.[4

7]

EQ

-5D

Map

pin

gS

pai

nS

pai

nG

ener

alpopula

tion

858 Qual Life Res (2013) 22:853–874

123

Ta

ble

1co

nti

nu

ed

Dis

ease

/condit

ion

Par

ent

mea

sure

(DS

M)

Dim

ensi

ons

of

par

ent

mea

sure

No.

of

item

s

Publi

cati

on

refe

rence

Val

uat

ion

tech

niq

ue

Map

pin

gver

sus

dir

ect

val

uat

ion

Sourc

eof

val

ue

(countr

y)

Sourc

eof

sam

ple

(countr

y)

Sourc

eof

pre

fere

nce

s

Obes

ity

Impac

tof

Wei

ght

on

Qual

ity

of

Lif

e-L

ite

(IW

QO

L-l

ite)

Physi

cal

funct

ion,

self

-est

eem

,se

xual

life

,publi

cdis

tres

s,w

ork

31

Bra

zier

etal

.[2

7]

SF

-6D

Map

pin

gU

KU

KC

om

munit

yvolu

nte

ers

and

par

tici

pan

tsin

wei

ght

loss

pro

gra

ms,

clin

ical

tria

ls,

and

gas

tric

bypas

s

studie

s

Moore

hea

d-A

rdel

tII

ques

tionnai

re(M

A-I

I)

Mood,

physi

cal

funct

ion,

soci

al

rela

tionsh

ips,

abil

ity

tow

ork

,

sexual

ity,

eati

ng

beh

avio

r

6S

auer

land

etal

.

[29]

EQ

-5D

SF

-6D

Map

pin

g6

Wes

tern

Euro

pea

n

countr

ies

(EQ

-5D

);

UK

(SF

-6D

)

Ger

man

y,

Cze

chia

,It

aly,

Spai

n

Morb

idly

obes

epat

ients

bef

ore

or

afte

rbar

iatr

ic

surg

ery

Ocu

lar

dis

ease

Vis

ual

acuit

y(m

easu

red

usi

ng

the

Snel

len

eye

char

t)

Sin

gle

item

des

crib

ing

deg

ree

of

vis

ual

acuit

y

1S

har

ma

etal

.[4

8]

TT

OD

irec

tval

uat

ion

US

US

Pat

ients

wit

hvar

ious

ocu

lar

condit

ions

Ost

eoar

thri

tis

(OA

)W

este

rnO

nta

rio

and

McM

aste

rU

niv

ersi

ty

Ost

eoar

thri

tis

Index

(WO

MA

C)

Pai

n,

stif

fnes

s,physi

cal

funct

ion

24

Gro

ote

ndors

tet

al.

[49]

HU

I3M

appin

gC

anad

aC

anad

aO

utp

atie

nts

wit

hknee

OA

Bar

ton

etal

.[5

0]

EQ

-5D

Map

pin

gU

KU

KP

atie

nts

who

aged

C45

yea

rs,

wit

h

BM

I[

28

kg/m

2,

and

knee

pai

n

Xie

etal

.[5

1]

EQ

-5D

Map

pin

gJa

pan

Sin

gap

ore

Pat

ients

wit

hknee

OA

Oti

tis

med

iaw

ith

effu

sion

(OM

E)

OM

E-s

pec

ific

Oti

tis

Med

ia

Ques

tionnai

re(O

M8-3

0)

Glo

bal

hea

lth,

resp

irat

ory

sym

pto

ms,

ear

pro

ble

ms,

slee

p,

beh

avio

r,

spee

chan

dla

nguag

e,sc

hool

pro

spec

ts,

par

ent

qual

ity

of

life

,

report

edhea

ring

dif

ficu

ltie

s

32

Dak

inet

al.

[52]

HU

I3

HU

I2

Map

pin

gC

anad

aU

KC

hil

dre

nw

ith

OM

E

Over

acti

ve

bla

dder

Over

acti

ve

Bla

dder

Ques

tionnai

re(O

AB

-q)

Copin

g,

conce

rn,

slee

p,

soci

al

inte

ract

ion,

sym

pto

mboth

ersc

ale

33

Yan

get

al.

[9]

TT

OD

irec

tval

uat

ion

UK

UK

Gen

eral

popula

tion

Pai

n(b

ack

and

leg)

Osw

estr

yD

isab

ilit

yIn

dex

(OD

I)

Bac

k-s

pec

ific

funct

ions:

pai

n

inte

nsi

ty,

per

sonal

care

,li

ftin

g,

wal

kin

g,

sitt

ing,

stan

din

g,

slee

pin

g,

work

,so

cial

life

,an

dtr

avel

ing

10

Car

reon

etal

.[5

3]

SF

-6D

Map

pin

gU

KU

KP

atie

nts

under

goin

glu

mbar

fusi

on

for

deg

ener

ativ

e

dis

ord

ers

Bac

kP

ain

Num

eric

Rat

ing

Sca

le(B

PN

RS

)

Sin

gle

item

des

crib

ing

level

of

bac

k

pai

n

1

Leg

Pai

nN

um

eric

Rat

ing

Sca

le(L

PN

RS

)

Sin

gle

item

des

crib

ing

level

of

leg

pai

n

1

Par

kin

son’s

Dis

ease

(PD

)

Par

kin

son’s

Dis

ease

Ques

tionnai

re(P

DQ

-8)

Mobil

ity,

acti

vit

ies

of

dai

lyli

vin

g,

emoti

onal

wel

l-bei

ng,

soci

al

support

,co

gnit

ion,

com

munic

atio

ns,

bodil

ydis

com

fort

,

stig

ma

8C

heu

ng

etal

.[5

4]

EQ

-5D

Map

pin

gJa

pan

Sin

gap

ore

PD

pat

ients

Pulm

onar

y

hyper

tensi

on

Cam

bri

dge

Pulm

onar

y

Hyper

tensi

on

Outc

om

e

Rev

iew

(CA

MP

HO

R)

QoL

scal

e

Soci

alac

tivit

ies,

trav

elin

g,

dep

enden

ce,

com

munic

atio

n

25

McK

enna

etal

.

[19]

TT

OD

irec

tval

uat

ion

UK

UK

Adult

gen

eral

popula

tion

Qual Life Res (2013) 22:853–874 859

123

Ta

ble

1co

nti

nu

ed

Dis

ease

/condit

ion

Par

ent

mea

sure

(DS

M)

Dim

ensi

ons

of

par

ent

mea

sure

No.

of

item

s

Publi

cati

on

refe

rence

Val

uat

ion

tech

niq

ue

Map

pin

gver

sus

dir

ect

val

uat

ion

Sourc

eof

val

ue

(countr

y)

Sourc

eof

sam

ple

(countr

y)

Sourc

eof

pre

fere

nce

s

Rheu

mat

oid

arth

riti

sH

ealt

hA

sses

smen

t

Ques

tionnai

reD

isab

ilit

y

Index

(HA

Q-D

I)

Dre

ssin

g,

aris

ing,

eati

ng,

wal

kin

g,

hygie

ne,

reac

h,

gri

p,

acti

vit

ies,

usi

ng

aids

or

dev

ices

,hel

pfr

om

oth

erin

div

idual

s

42

Ban

sbac

ket

al.

[55]

EQ

-5D

SF

-6D

Map

pin

gU

K(E

Q-5

D);

UK

(SF

-6D

)

Can

ada,

UK

Rheu

mat

oid

arth

riti

s

pat

ients

Hea

lth

Ass

essm

ent

Ques

tionnai

re(H

AQ

)

Dre

ssin

g,

aris

ing,

eati

ng,

wal

kin

g,

hygie

ne,

reac

h,

gri

p,

acti

vit

ies

20

Wolf

eet

al.

[56]

EQ

-5D

SF

-6D

Map

pin

gU

S(E

Q-5

D);

UK

(EQ

-5D

);

UK

(SF

-6D

)

US

Rheu

mat

oid

arth

riti

s

pat

ients

Hea

lth

Ass

essm

ent

Ques

tionnai

reD

isab

ilit

y

Index

(HA

Q-D

I)

Dre

ssin

g,

aris

ing,

eati

ng,

wal

kin

g,

hygie

ne,

reac

h,

gri

p,

acti

vit

ies

20

Car

reno

etal

.[5

7]

HU

I3

EQ

-5D

Map

pin

gS

pai

n(H

UI3

);

Spai

n(E

Q-

5D

)

Spai

nR

heu

mat

oid

arth

riti

s

pat

ients

Sch

izophre

nia

Posi

tive

and

Neg

ativ

e

Sym

pto

mS

cale

(PA

NS

S)

Posi

tive,

neg

ativ

e,gen

eral

psy

chopat

holo

gy

30

Len

ert

etal

.[5

8]

SG

VA

S

Dir

ect

val

uat

ion

US

US

Hea

lthy

subje

cts

who

volu

nte

ered

topar

tici

pat

e

inIn

tern

etsu

rvey

rese

arch

Sle

epdis

ord

ers

Sle

epP

roble

mIn

dex

-II

(SL

P9)

Sle

epin

itia

tion

pro

ble

ms,

slee

p

mai

nte

nan

cepro

ble

ms,

resp

irat

ory

pro

ble

ms

duri

ng

slee

p,

slee

p

adeq

uac

y,

som

nole

nce

9Y

ang

etal

.[5

9]

SF

-6D

Map

pin

gU

KU

SC

hro

nic

ally

ill

pat

ients

Str

oke

Bar

thel

Index

Fee

din

g,

dre

ssin

g,

gro

om

ing,

bat

hin

g,

toil

etuse

,tr

ansf

er,

stai

rs,

mobil

ity,

bla

dder

,bow

els

10

Mort

imer

etal

.

[60]

Ass

essm

ent

of

Qual

ity

of

Lif

e

(AQ

oL

)

Map

pin

gA

ust

rali

aA

ust

rali

aA

cute

stro

ke

pat

ients

Modifi

edR

ankin

scal

e(m

RS

)S

ingle

item

des

crib

ing

level

of

han

dic

ap(a

ctiv

ity

lim

itat

ions

and

life

style

chan

ges

)

1R

iver

o-A

rias

etal

.

[61]

EQ

-5D

Map

pin

gU

KU

KS

troke

or

tran

sien

t

isch

emic

atta

ckpat

ients

Ulc

erat

ive

coli

tis

(UC

)

Physi

cian

-rat

edU

lcer

ativ

e

Coli

tis

Dis

ease

Act

ivit

y

Index

(UC

DA

I)

Sto

ol

freq

uen

cy,

rect

alble

edin

g,

endosc

opic

eval

uat

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860 Qual Life Res (2013) 22:853–874

123

the validity of the mapping function assessed by applying it

to external validation sample and comparing the predicted

and observed values. Alternatively, sets of health state sce-

narios (health state classification system) were first devel-

oped based on the items of disease-specific measure, which

were then directly valued by a representative sample of

population (valuation survey) to yield the estimated prefer-

ence weights or scoring algorithm [9, 12–20]. This approach

was mostly adopted in the studies that include conversions to

utility metrics of rating scales, standard gamble, and time

tradeoff. Other methods have also been explored. For

instance, Poole et al. [21] mapped the DSM onto the response

of each EQ-5D domain, rather than directly onto the generic

utility scores (i.e., EQ-5D index). Grimison et al. [22] con-

verted the subscales of DSM into a subset index and com-

bined it with the global scale into an overall HRQoL index,

which was then converted to a utility index.

Of a total of 50 papers, 34 studies used a mapping

approach, while 16 studies were based on direct valuation.

Twenty-five studies mapped a DSM onto EQ-5D to derive

a utility function (DSPM). As shown in Table 2, although

all studies attempted to generate utility scores that theo-

retically have an upper range of 1, a few algorithms appear

to generate utility scores that exceed the upper limit (e.g.,

1.04). The goodness-of-fit statistics such as R2 and RMSE

indicated that the model performance varied dramatically

across studies.

To identify aspects of HRQoL where the EQ-5D may

provide insufficient coverage, we examined the overlap of

core dimensions between each DSPM and EQ-5D. In

cancer, cognitive functioning [23–26] and social well-

being [15, 18] were dimensions not explicitly covered by

the EQ-5D based on face validity (Table 3). Sexual func-

tioning, which is not explicitly included among EQ-5D

dimensions, was a component of HRQoL on several

DSPMs, including those relating to coronary artery disease

(CAD), obesity, erectile dysfunction, and menopause [12,

13, 27–29]. Self-esteem (obesity), self-confidence (growth

hormone deficiency), coping (overactive bladder), social

relationships (obesity and growth hormone deficiency),

cognition (Parkinson’s disease, hydrocephalus, and chronic

liver diseases), treatment satisfaction (CAD), vision (age-

related macular degeneration), and visual acuity (ocular

disease) were also dimensions of HRQoL not on the EQ-

5D that were covered by DSPM. Conversely, the EQ-5D

had content coverage of generic dimensions of HRQoL that

were often omitted from DSPM.

Discussion

EQ-5D is a generic preference-based instrument designed

to measure health-related quality of life and characterized

by ease of administration. However, given the parsimony

in the dimensions and levels of questionnaire, it potentially

lacks the ability to discriminate among and respond to

changes in patients with health-related problems and

symptoms relevant to a certain disease. We examined the

face validity of disease-specific utility measures in the

literature in order to identify dimensions of health and

well-being included in those measures that are not explic-

itly covered by the EQ-5D. Differences in the face validity

between disease-specific measures and generic measures

like the EQ-5D may be a major reason that different

responses can be reported for a particular condition by the

same respondent, despite the similarities in the nature of

the domains. In order to provide broader insights into this

issue, we did not limit our study strictly to studies

involving EQ-5D as the generic preference-based measure.

The review identified several candidate dimensions of

HRQoL in condition where bolt-ons may warrant further

investigation.

This review is only an initial step in examining the

possible candidate conditions in which bolt-ons may be

considered. For studies of which target mapping measures

are not EQ-5D, examining the dimensions on DSPM that

are missing from EQ-5D helps to identify the absence of

content coverage of EQ-5D. It gives an indication of the

dimensions that have been considered as important in the

development of disease-specific measures of HRQoL and

whether these are explicitly included in EQ-5D. Utility

value sets directly derived from respondents are the most

likely sources of information to help identify potential

‘‘bolt-on’’ dimensions that provide unique explanatory

power for overall utility scores above and beyond the EQ-

5D core dimensions. We identified several candidate

dimensions in condition where bolt-ons may be justified,

such as coping (overactive bladder), social relationships

(cancer), cognition (cancer), sexual function (coronary

heart disease, erectile dysfunction, and menopause), and

visual functioning (ocular disease).

If failure to capture differences in HRQoL occurs, it

may be a function of the absence of content coverage or

due to the lack of precision/granularity of the measure.

Many of the DSPM studies derived algorithms with content

that extensively overlapped with the content on the EQ-5D.

DSPM studies that used EQ-5D utility scores as the basis

for the mapping algorithm, especially those without model

variable selection, were unlikely to provide insight into the

content areas missing from the EQ-5D, even though the

inherent lack of overlap between DSM and EQ-5D is a

major contributor to the predictive ability of the model

(e.g., can be indicated by R2 or other goodness-of-fit sta-

tistics). Nonetheless, these studies, while parallelizing the

dimensions contained in the DSPM and EQ-5D, can sug-

gest dimensions where EQ-5D may lack precision of

Qual Life Res (2013) 22:853–874 861

123

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862 Qual Life Res (2013) 22:853–874

123

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Qual Life Res (2013) 22:853–874 863

123

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ease

Act

ivit

yIn

dex

(CD

AI)

0.2

0(E

Q-5

D)

0.3

6(S

F-6

D)

0.9

2(E

Q-5

D)

0.8

1(S

F-6

D)

0.2

9(E

Q-5

D);

0.3

7(S

F-6

D)

Mea

nab

solu

te

per

centa

ge

erro

r:

13.6

%(E

Q-5

D);

8.0

%(S

F-6

D)

Men

opau

seQ

ual

iPau

seIn

ven

tory

(QP

I)B

razi

eret

al.

[13

]T

TO

Dir

ect

val

uat

ion

199

0.6

10.9

40.1

78

MA

E:

0.0

53

Men

tal

hea

lth

Gen

eral

Hea

lth

Ques

tionnai

re

(GH

Q-1

2)

Ser

rano-A

guil

ar

etal

.[4

7]

EQ

-5D

Map

pin

g3,5

67

N/A

N/A

0.3

7M

ean

rela

tive

fore

cast

erro

r:16

%

Obes

ity

Impac

tof

Wei

ght

on

Qual

ity

of

Lif

e-L

ite

(IW

QO

L-l

ite)

Bra

zier

etal

.[2

7]

SF

-6D

Map

pin

g1,9

72

0.4

90.8

80.5

14

(dev

elopm

enta

l

sam

ple

);0.5

30

(cro

ss-

val

idat

ion

sam

ple

)

0.0

976

Moore

hea

d-A

rdel

tII

ques

tionnai

re(M

A-I

I)

Sau

erla

nd

etal

.

[29]

EQ

-5D

SF

-6D

Map

pin

g893

(cro

ss-v

alid

atio

n

use

dse

cond

hal

fof

the

sam

ple

)

0.4

9(E

Q-5

D);

0.3

8(S

F-6

D)

1.0

0(E

Q-5

D);

0.8

5(S

F-6

D)

Map

pin

gw

ith

EQ

-5D

:0.4

46

(dev

elopm

enta

lsa

mple

);

0.5

51

(cro

ss-v

alid

atio

n

sam

ple

)

Map

pin

gw

ith

SF

-6D

:0.5

72

(dev

elopm

enta

lsa

mple

);

0.5

43

(cro

ss-v

alid

atio

n

sam

ple

)

Mea

nab

solu

te

per

centa

ge

erro

r:20

%

(EQ

-5D

);11

%

(SF

-6D

)

Ocu

lar

dis

ease

Vis

ual

acuit

y(m

easu

red

usi

ng

the

Snel

len

eye

char

t)

Shar

ma

etal

.[4

8]

TT

OD

irec

t

val

uat

ion

239

0.5

50.8

90.1

73

N/A

Ost

eoar

thri

tis

Wes

tern

Onta

rio

and

McM

aste

r

Univ

ersi

tyO

steo

arth

riti

sIn

dex

(WO

MA

C)

Gro

ote

ndors

tet

al.

[49]

HU

I3M

appin

g255

N/A

N/A

Adju

sted

R2:

0.3

90.2

1

Bar

ton

etal

.[5

0]

EQ

-5D

Map

pin

g348

N/A

N/A

Adju

sted

R2:

0.3

13

0.1

80

Xie

etal

.[5

1]

EQ

-5D

Map

pin

g258

0.5

69

0.8

34

Adju

sted

R2:

0.4

49

0.0

95

Oti

tis

med

iaw

ith

effu

sion

(OM

E)

OM

E-s

pec

ific

Oti

tis

Med

ia

Ques

tionnai

re(O

M8-3

0)

Dak

inet

al.

[52

]H

UI3

HU

I2

Map

pin

g217

N/A

N/A

0.6

258

(HU

I3);

N/A

(HU

I2)

0.1

744

(HU

I3);

N/A

(HU

I2)

Over

acti

ve

bla

dder

Over

acti

ve

Bla

dder

Ques

tionnai

re

(OA

B-q

)

Yan

get

al.

[9]

TT

OD

irec

t

val

uat

ion

312

0.6

11.0

0N

/AM

AE

:0.0

45

Pai

n(b

ack

and

leg)

Osw

estr

yD

isab

ilit

yIn

dex

(OD

I)/

Bac

kP

ain

Num

eric

Rat

ing

Sca

le(B

PN

RS

)/L

egP

ain

Num

eric

Rat

ing

Sca

le

(LP

NR

S)

Car

reon

etal

.[5

3]

SF

-6D

Map

pin

g2,6

40

(use

ase

par

ate,

indep

enden

tdat

ase

t

of

2,1

74

pat

ients

for

val

idat

ion)

0.2

8(w

ith

OD

I,

BP

NR

S,

and

LP

NR

Sin

the

model

);

0.2

6(w

ith

only

OD

Iin

the

model

);

0.8

0(w

ith

OD

I,

BP

NR

S,

and

LP

NR

Sin

the

model

);

0.7

8(w

ith

only

OD

Iin

the

model

);

0.6

9(w

ith

OD

I,B

PN

RS

,

and/o

rL

PN

RS

inth

e

model

);

0.6

7(w

ith

only

OD

Iin

the

model

)

0.0

76

(wit

hO

DI,

BP

NR

S,

and/o

r

LP

NR

Sin

the

model

);

0.0

78

(wit

honly

OD

Iin

the

model

)

Par

kin

son’s

Dis

ease

(PD

)

Par

kin

son’s

Dis

ease

Ques

tionnai

re(P

DQ

-8)

Cheu

ng

etal

.[5

4]

EQ

-5D

Map

pin

g162

(tota

lly

324

pat

ients

enro

lled

,th

e

oth

er162

for

val

idat

ion)

0.2

80.8

70.5

21

(dev

elopm

enta

l

sam

ple

);0.4

43

(cro

ss-

val

idat

ion

sam

ple

)

MA

E:

0.0

85

(dev

elopm

enta

l

sam

ple

);0.0

96

(cro

ss-

val

idat

ion

sam

ple

)

864 Qual Life Res (2013) 22:853–874

123

Ta

ble

2co

nti

nu

ed

Dis

ease

/condit

ion

Par

ent

mea

sure

(DS

M)

Publi

cati

on

refe

rence

Val

uat

ion

tech

niq

ue

Map

pin

g

ver

sus

dir

ect

val

uat

ion

Sam

ple

size

(par

tici

pan

ts)

Theo

reti

cal

range

of

uti

lity

score

*G

oodnes

s-of-

fit

stat

isti

csof

esti

mat

ion

model

*

Min

imum

Max

imum

R2

RM

SE

Pulm

onar

y

hyper

tensi

on

Cam

bri

dge

Pulm

onar

y

Hyper

tensi

on

Outc

om

eR

evie

w

(CA

MP

HO

R)

QoL

scal

e

McK

enna

etal

.

[19]

TT

OD

irec

t

val

uat

ion

249

0.1

40.9

6A

dju

sted

R2:

0.9

36

MA

E:

0.0

41

Rheu

mat

oid

arth

riti

s

Hea

lth

Ass

essm

ent

Ques

tionnai

re

Dis

abil

ity

Index

(HA

Q-D

I)

Ban

sbac

ket

al.

[55]

EQ

-5D

SF

-6D

Map

pin

g131

inU

K,

and

308

in

Can

ada

-0.8

7(E

Q-

5D

);0.4

9

(SF

-6D

)

0.9

9(E

Q-5

D);

0.8

2(S

F-6

D)

Mar

gin

alR

2:

0.5

7(E

Q-5

D);

0.5

0(S

F-6

D)

0.1

8(E

Q-5

D);

0.0

9

(SD

-6D

)

Hea

lth

Ass

essm

ent

Ques

tionnai

re

(HA

Q)

Wolf

eet

al.

[56]

EQ

-5D

SF

-6D

Map

pin

g10,8

95

0.3

4(U

SE

Q-

5D

);0.0

8

(UK

EQ

-5D

);

0.4

2(S

F-6

D)

0.9

5(U

SE

Q-

5D

);0.9

6

(UK

EQ

-5D

);

0.8

4(S

F-6

D)

Adju

sted

R2:

0.5

7(U

SE

Q-

5D

);0.5

5(U

KE

Q-5

D);

0.5

2(S

F-6

D)

0.1

2(U

SE

Q-5

D);

0.1

9

(UK

EQ

-5D

);0.0

9

(SF

-6D

)

Hea

lth

Ass

essm

ent

Ques

tionnai

re

Dis

abil

ity

Index

(HA

Q-D

I)

Car

reno

etal

.[5

7]

HU

I3

EQ

-5D

Map

pin

g244

0.3

5(H

UI3

);

0.0

3(E

Q-5

D)

0.9

5(H

UI3

);

0.9

6(E

Q-5

D)

Adju

sted

R2:

0.5

6(H

UI3

);

0.5

4(E

Q-5

D)

N/A

Sch

izophre

nia

Posi

tive

and

Neg

ativ

eS

ym

pto

m

Sca

le(P

AN

SS

)

Len

ert

etal

.[5

8]

SG

VA

S

Dir

ect

val

uat

ion

441

0.4

2(S

G);

0.1

8

(VA

S)

0.1

8(S

G);

0.7

2

(VA

S)

N/A

N/A

Sle

epdis

ord

ers

Sle

epP

roble

mIn

dex

-II

(SL

P9)

Yan

get

al.

[59]

SF

-6D

Map

pin

g1,0

00

0.5

20.8

90.3

4(b

oth

dev

elopm

enta

l

sam

ple

and

cross

-

val

idat

ion

sam

ple

)

13.9

7

Str

oke

Bar

thel

Index

Mort

imer

etal

.

[60]

Ass

essm

ent

of

Qual

ity

of

Lif

e

(AQ

oL

)

Map

pin

g859

[Index

-bas

ed

algori

thm

]:

0.1

8;

[Ite

m-b

ased

algori

thm

]:

0.1

2

[Index

-bas

ed

algori

thm

]:

0.6

2;

[Ite

m-b

ased

algori

thm

]:

0.7

2

[Index

-bas

edal

gori

thm

]:

0.6

3;

[Ite

m-b

ased

algori

thm

]:

0.6

3;

N/A

Modifi

edR

ankin

scal

e(m

RS

)R

iver

o-A

rias

etal

.

[61]

EQ

-5D

Map

pin

g1,2

83

-0.0

60.9

4[O

LS

model

]:R

20.4

503;

[ML

ogit

model

]:P

seudo-R

2

ranged

from

0.0

442

to

0.4

061

acro

ssth

e5

dim

ensi

ons

inE

Q-5

D

[OL

Sm

odel

]:0.2

1;

[ML

ogit

model

]:0.2

1

Ulc

erat

ive

coli

tis

(UC

)

Physi

cian

-rat

edU

lcer

ativ

eC

oli

tis

Dis

ease

Act

ivit

yIn

dex

(UC

DA

I)

Poole

etal

.[2

1]

EQ

-5D

Map

pin

g126

(use

oth

er359

pat

ients

for

val

idat

ion)

N/A

N/A

N/A

0.1

38

Uri

nar

y

inco

nti

nen

ce

Kin

g’s

Hea

lth

Ques

tionnai

re

(KH

Q)

Bra

zier

etal

.[2

0]

SG

Dir

ect

val

uat

ion

110

0.8

91.0

0A

dju

sted

R2:

0.3

2M

AE

:0.0

18

HU

IH

ealt

hU

tili

ties

Index

,M

AE

mea

nab

solu

teer

ror,

N/A

not

avai

lable

or

not

appli

cable

,O

LS

ord

inar

yle

ast

squar

e,R

MSE

root

mea

nsq

uar

eder

ror,

SG

stan

dar

dgam

ble

,T

TO

tim

etr

adeo

ff,

UK

Unit

edK

ingdom

,U

SU

nit

edS

tate

s,

VA

Svis

ual

anal

og

scal

e

*B

ased

on

mult

i-at

trib

ute

algori

thm

reco

mm

ended

by

auth

ors

Qual Life Res (2013) 22:853–874 865

123

Ta

ble

3C

om

par

iso

no

fco

red

imen

sio

ns

inD

SP

Man

dE

Q-5

D

Dis

ease

/

condit

ion

Par

ent

mea

sure

(DS

M)

Publi

cati

on

refe

rence

Val

uat

ion

tech

niq

ue

Dim

ensi

ons

of

DS

Min

volv

edin

final

(or

most

reco

mm

ended

)

DS

PM

Conte

nt

val

idit

yev

aluat

ion

wit

hD

SP

Man

dE

Q-5

D

Over

lappin

gof

DS

PM

and

EQ

-5D

Dim

ensi

ons

on

DS

PM

mis

sing

from

EQ

-5D

Dim

ensi

ons

on

EQ

-5D

mis

sing

from

DS

PM

Dim

ensi

ons

on

DS

PM

cover

edby

EQ

-5D

Dim

ensi

onal

equiv

alen

tin

EQ

-5D

Age-

rela

ted

mac

ula

r

deg

ener

atio

n

(AM

D)

Nat

ional

Eye

Inst

itute

Vis

ion

Funct

ion

Ques

tionnai

re(N

EI-

VF

Q25)

Pay

akac

hat

etal

.

[34]

EQ

-5D

All

com

ponen

ts(a

sa

com

posi

te

score

)

Ocu

lar

pai

n

Men

tal

hea

lth

Dep

enden

cy

Nea

rac

tivit

ies,

Dis

tance

acti

vit

ies,

Soci

al

funct

ionin

g,

Dri

vin

g,

Role

dif

ficu

ltie

s

Pai

n/D

isco

mfo

rt

Anxie

ty/D

epre

ssio

n

Sel

f-ca

re

Usu

alac

tivit

ies,

Mobil

ity

Gen

eral

vis

ion,

Colo

r

vis

ion,

Per

ipher

al

vis

ion

–

Ast

hm

aA

sthm

aQ

ual

ity

of

Lif

e

Ques

tionnai

re(A

QL

Q)

Tsu

chiy

aet

al.

[11]

EQ

-5D

All

com

ponen

tsS

ym

pto

ms,

Act

ivit

ies,

Em

oti

ons,

Envir

onm

ent

Usu

alac

tivit

ies,

Anxie

ty/

Dep

ress

ion,

Pai

n/

Dis

com

fort

–M

obil

ity,

Sel

f-ca

re

Ato

pic

der

mat

itis

(in

chil

dre

n)

Par

ents

’In

dex

of

Qual

ity

of

Lif

e-A

topic

Der

mat

itis

(PIQ

oL

-

AD

)—ch

ild-c

ente

red

Ste

ven

set

al.

[17

]S

GA

llco

mponen

tsA

ctiv

ity,

Mood,

Set

tled

,S

leep

Usu

alac

tivit

ies,

Anxie

ty/

Dep

ress

ion,

Pai

n/

Dis

com

fort

–M

obil

ity,

Sel

f-ca

re

Can

cer

Funct

ional

Ass

essm

ent

of

Can

cer

Ther

apy-

Gen

eral

(FA

CT

-G)

Dobre

zet

al.

[35]

TT

OP

hysi

cal

wel

l-bei

ng,

Funct

ional

wel

l-bei

ng

Physi

cal

wel

l-bei

ng

Funct

ional

wel

l-bei

ng

Pai

n/D

isco

mfo

rt

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

–A

nxie

ty/

Dep

ress

ion

Cheu

ng

etal

.[3

6]

EQ

-5D

Physi

cal

wel

l-bei

ng,

Em

oti

onal

wel

l-bei

ng,

Funct

ional

wel

l-bei

ng

Physi

cal

wel

l-bei

ng

Em

oti

onal

wel

l-bei

ng

Funct

ional

wel

l-bei

ng

Pai

n/D

isco

mfo

rt

Anxie

ty/D

epre

ssio

n

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

––

Rott

erdam

Sym

pto

m

Chec

kli

sts

(RS

C)/

Hosp

ital

Anxie

tyan

d

Dep

ress

ion

Sca

le

(HA

DS

)/A

ddit

ional

8

ques

tions

in

per

form

ance

and

acti

vit

y

Chan

cell

or

etal

.

[37]

EQ

-5D

,

HU

I3

5it

ems

sele

cted

thro

ugh

fact

or

anal

ysi

s:M

ood/a

nxie

ty,

Sym

pto

ms,

Per

form

ance

,

Funct

ion/m

oti

vat

ion,

Ener

gy/

vit

alit

y

Mood/a

nxie

ty

Sym

pto

ms

Per

form

ance

Anxie

ty/D

epre

ssio

n

Pai

n/D

isco

mfo

rt

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

Funct

ion/m

oti

vat

ion,

Ener

gy/v

ital

ity

–

Uti

lity

-Bas

ed

Ques

tionnai

re-C

ance

r

(UB

Q-C

)

Gri

mis

on

etal

.

[22]

TT

OA

llco

mponen

tsP

hysi

cal

funct

ion,

Soci

al/

usu

alac

tivit

ies,

Sel

f-ca

re

Dis

tres

s

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

Pai

n/D

isco

mfo

rt,

Anxie

ty/

Dep

ress

ion

––

Euro

pea

nO

rgan

izat

ion

for

Res

earc

han

d

Tre

atm

ent

of

Can

cer

Qual

ity

of

Lif

e

Ques

tionnai

re

(EO

RT

CQ

LQ

-C30)

Konto

dim

opoulo

s

etal

.[2

3]

EQ

-5D

,

SF

-6D

,

15D

[Map

pin

gw

ith

EQ

-5D

]:P

hysi

cal

funct

ionin

g,

Em

oti

onal

funct

ionin

g,

Over

all

hea

lth

[Map

pin

gw

ith

SF

-6D

]:S

oci

al

funct

ionin

g,

Over

all

hea

lth,

Em

oti

onal

funct

ionin

g,

Pai

n,

Const

ipat

ion,

Dysp

nea

[Map

pin

gw

ith

15D

]:P

hysi

cal

funct

ionin

g,

Over

all

hea

lth,

Inso

mnia

,C

ognit

ive

funct

ionin

g

Physi

cal,

Soci

alfu

nct

ionin

gU

sual

acti

vit

ies,

Mobil

ity,

Sel

f-ca

re

Cognit

ive

funct

ionin

g–

Em

oti

onal

funct

ionin

gA

nxie

ty/D

epre

ssio

n

Sym

pto

ms

Pai

n/D

isco

mfo

rt

Over

all

hea

lth

866 Qual Life Res (2013) 22:853–874

123

Ta

ble

3co

nti

nu

ed

Dis

ease

/

condit

ion

Par

ent

mea

sure

(DS

M)

Publi

cati

on

refe

rence

Val

uat

ion

tech

niq

ue

Dim

ensi

ons

of

DS

Min

volv

edin

final

(or

most

reco

mm

ended

)

DS

PM

Conte

nt

val

idit

yev

aluat

ion

wit

hD

SP

Man

dE

Q-5

D

Over

lappin

gof

DS

PM

and

EQ

-5D

Dim

ensi

ons

on

DS

PM

mis

sing

from

EQ

-5D

Dim

ensi

ons

on

EQ

-5D

mis

sing

from

DS

PM

Dim

ensi

ons

on

DS

PM

cover

edby

EQ

-5D

Dim

ensi

onal

equiv

alen

tin

EQ

-5D

Can

cer

Euro

pea

nO

rgan

izat

ion

for

Res

earc

han

d

Tre

atm

ent

of

Can

cer

Qual

ity

of

Lif

e

Ques

tionnai

re

(EO

RT

CQ

LQ

-C30)

McK

enzi

eet

al.

[24]

EQ

-5D

All

com

ponen

tsP

hysi

cal,

Role

,S

oci

al

funct

ionin

g

Em

oti

onal

funct

ionin

g

Sym

pto

ms

Over

all

hea

lth

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

Anxie

ty/D

epre

ssio

n

Pai

n/D

isco

mfo

rt

Cognit

ive

funct

ionin

g–

Pic

kar

det

al.

[25]

TT

OW

ith

mult

i-at

trib

ute

appro

ach:

Physi

cal

funct

ionin

g,

Role

funct

ionin

g,

Fat

igue,

Pai

n,

Cognit

ive

funct

ionin

g

Wit

hglo

bal

appro

ach:

Over

all

hea

lth

Physi

cal,

Role

funct

ionin

gU

sual

acti

vit

ies,

Mobil

ity,

Sel

f-ca

re

Cognit

ive

funct

ionin

gA

nxie

ty/

Dep

ress

ion

Sym

pto

ms

Pai

n/D

isco

mfo

rt

Over

all

hea

lth

Cro

ttet

al.

[38]

EQ

-5D

Physi

cal

funct

ionin

g,

Em

oti

onal

funct

ionin

g,

Soci

alfu

nct

ionin

g,

Sym

pto

ms

(pai

n,

inso

mnia

,

const

ipat

ion,

dia

rrhea

)

Physi

cal,

Soci

alfu

nct

ionin

gU

sual

acti

vit

ies,

Mobil

ity,

Sel

f-ca

re

––

Em

oti

onal

funct

ionin

gA

nxie

ty/D

epre

ssio

n

Sym

pto

ms

Pai

n/D

isco

mfo

rt

Jang

etal

.[3

9]

EQ

-5D

Physi

cal

funct

ionin

g,

Role

funct

ionin

g,

Em

oti

onal

funct

ionin

g,

Soci

alfu

nct

ionin

g,

Pai

n

Physi

cal,

Role

,S

oci

al

funct

ionin

g

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

––

Em

oti

onal

funct

ionin

gA

nxie

ty/D

epre

ssio

n

Pai

nP

ain/D

isco

mfo

rt

Can

cer-

lung

FA

CT

-Lung

(FA

CT

-L)

Ver

sion

4

Kin

det

al.

[15]

VA

SP

hysi

cal

wel

l-bei

ng,

Soci

alw

ell-

bei

ng,

Em

oti

onal

wel

l-bei

ng,

Funct

ional

wel

l-bei

ng,

Gen

eral

sym

pto

m,

Spec

ific

sym

pto

m

Physi

cal

wel

l-bei

ng,

Sym

pto

ms

Pai

n/D

isco

mfo

rtS

oci

alw

ell-

bei

ng*

–

Em

oti

onal

wel

l-bei

ng

Anxie

ty/D

epre

ssio

n

Funct

ional

wel

l-bei

ng

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

Lam

ers

etal

.[1

8]

VA

SP

hysi

cal

wel

l-bei

ng,

Soci

alw

ell-

bei

ng,

Em

oti

onal

wel

l-bei

ng,

Funct

ional

wel

l-bei

ng,

Gen

eral

sym

pto

m,

Condit

ion-s

pec

ific

sym

pto

m

Physi

cal

wel

l-bei

ng,

Sym

pto

ms

Pai

n/D

isco

mfo

rtS

oci

alw

ell-

bei

ng*

–

Em

oti

onal

wel

l-bei

ng

Anxie

ty/D

epre

ssio

n

Funct

ional

wel

l-bei

ng

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

Can

cer-

pro

stat

eF

AC

T-P

rost

ate

(FA

CT

-

P)/

EO

RT

CQ

LQ

-C30

Wu

etal

.[2

6]

EQ

-5D

All

FA

CT

-Pco

mponen

tsan

dal

l

EO

RT

CQ

LQ

-C30

com

ponen

ts

Physi

cal,

Role

,S

oci

al

funct

ionin

g

Em

oti

onal

funct

ionin

g

Sym

pto

ms

Over

all

hea

lth

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

Anxie

ty/D

epre

ssio

n

Pai

n/D

isco

mfo

rt

Sat

isfa

ctio

nw

ith

the

doct

or–

pat

ient

rela

tionsh

ip,

Cognit

ive

funct

ionin

g

–

Chro

nic

obst

ruct

ive

pulm

onar

y

dis

ease

(CO

PD

)

exac

erbat

ion

Exac

erbat

ions

of

Chro

nic

Pulm

onar

yD

isea

se

Tool

(EX

AC

T)

Pet

rill

oet

al.

[14]

TT

OC

hes

tdis

com

fort

,C

ough,

Short

nes

s

of

bre

ath

wit

hac

tivit

y,

Psy

cholo

gic

alst

ate,

Wea

k/t

ired

Psy

cholo

gic

alst

ate

Ches

tdis

com

fort

,C

ough,

Short

nes

sof

bre

ath

wit

h

acti

vit

y,

Wea

k/t

ired

Anxie

ty/D

epre

ssio

n

Usu

alac

tivit

ies,

Pai

n/

Dis

com

fort

–M

obil

ity,

Sel

f-ca

re

Qual Life Res (2013) 22:853–874 867

123

Ta

ble

3co

nti

nu

ed

Dis

ease

/

condit

ion

Par

ent

mea

sure

(DS

M)

Publi

cati

on

refe

rence

Val

uat

ion

tech

niq

ue

Dim

ensi

ons

of

DS

Min

volv

edin

final

(or

most

reco

mm

ended

)

DS

PM

Conte

nt

val

idit

yev

aluat

ion

wit

hD

SP

Man

dE

Q-5

D

Over

lappin

gof

DS

PM

and

EQ

-5D

Dim

ensi

ons

on

DS

PM

mis

sing

from

EQ

-5D

Dim

ensi

ons

on

EQ

-5D

mis

sing

from

DS

PM

Dim

ensi

ons

on

DS

PM

cover

edby

EQ

-5D

Dim

ensi

onal

equiv

alen

tin

EQ

-5D

Coro

nar

yar

tery

dis

ease

Duke

Act

ivit

yS

tatu

s

Index

(DA

SI)

/RA

ND

Men

tal

Hea

lth

Inven

tory

(MH

I-5)/

Can

adia

n

Car

dio

vas

cula

rS

oci

ety

(CC

S)

Angin

a

Cla

ssifi

cati

on/O

ver

all

hea

lth

rati

ng/H

ealt

h

stat

us

Mel

sop

etal

.[2

8]

TT

OA

llco

mponen

ts(D

AS

Ian

dM

HI-

5

asin

dex

score

s)

Per

sonal

care

Sel

f-ca

reS

exual

funct

ion

–

Am

bula

tion

Mobil

ity

House

hold

task

s,R

ecre

atio

nal

acti

vit

ies

Usu

alac

tivit

ies

Anxie

ty,

Dep

ress

ion,

Beh

avio

ral

contr

ol,

Posi

tive

affe

ct

Anxie

ty/D

epre

ssio

n

Sev

erit

yof

angin

aP

ain/D

isco

mfo

rt

Can

adia

nC

ardio

vas

cula

r

Soci

ety

(CC

S)

Angin

a

Cla

ssifi

cati

on/

Bre

athle

ssnes

sG

rade

(BG

)

Longw

ort

het

al.

[40]

EQ

-5D

All

com

ponen

ts(a

ssi

ngle

item

score

)

Sin

gle

item

des

crib

ing

sever

ity

of

angin

a(a

ngin

a

pai

n)/

Sin

gle

item

des

crib

ing

sever

ity

of

angin

a

(bre

athle

ssnes

s)

Pai

n/D

isco

mfo

rt,

Usu

al

acti

vit

ies,

Mobil

ity

–S

elf-

care

,A

nxie

ty/

Dep

ress

ion

Sea

ttle

Angin

a

Ques

tionnai

re(S

AQ

)

Gold

smit

het

al.

[33]

EQ

-5D

Physi

cal

lim

itat

ion,

angin

al

freq

uen

cy,

dis

ease

per

cepti

on

Physi

cal

lim

itat

ion

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

––

Angin

alfr

equen

cyP

ain/D

isco

mfo

rt

Dis

ease

per

cepti

on

Anxie

ty/D

epre

ssio

n

Wij

eysu

nder

a

etal

.[4

1]

EQ

-5D

All

com

ponen

tsP

hysi

cal

lim

itat

ion

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

Tre

atm

ent

sati

sfac

tion

–

Angin

alst

abil

ity,

Angin

al

freq

uen

cy

Pai

n/D

isco

mfo

rt

Dis

ease

per

cepti

on

Anxie

ty/D

epre

ssio

n

Chro

nic

liver

dis

ease

Liv

erD

isea

seS

ym

pto

m

Index

(LD

SI)

2.0

wit

h

6it

emex

tensi

on

Gutt

elin

get

al.

[42]

SF

-6D

[In

all

CL

Dpat

ients

exce

pt

for

HC

V]:

All

com

ponen

ts

[In

pat

ients

wit

hH

CV

]:A

ll

com

ponen

ts

Itch

,jo

int

pai

n,

pai

nin

right

upper

abdom

en,

fati

gue,

dec

reas

edap

pet

ite,

jaundic

e

Pai

n/D

isco

mfo

rtC

han

ge

of

per

sonal

ity,

hin

dra

nce

in

finan

cial

affa

irs,

mem

ory

pro

ble

ms

Mobil

ity,

Sel

f-ca

re

Worr

yab

out

fam

ily

situ

atio

n,

dep

ress

ion,

fear

of

com

pli

cati

ons

Anxie

ty/D

epre

ssio

n

Dai

lyti

me

man

agem

ent,

dec

reas

edse

xual

inte

rest

,

dec

reas

edse

xual

acti

vit

y

Usu

alac

tivit

ies

Deg

ener

ativ

e

dis

kdis

ease

(cer

vic

al

spin

e)

Cer

vic

alS

pin

eO

utc

om

es

Ques

tionnai

re(C

SO

Q)

Skola

sky

etal

.

[43]

SF

-6D

Arm

/should

erpai

n,

Funct

ional

dis

abil

ity,

Psy

cholo

gic

dis

tres

s,

Physi

cal

sym

pto

ms

Funct

ional

dis

abil

ity

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

––

Psy

cholo

gic

dis

tres

sA

nxie

ty/D

epre

ssio

n

Arm

/should

erpai

n,

Physi

cal

sym

pto

ms

Pai

n/D

isco

mfo

rt

Den

tal/

Ora

l

hea

lth

Ora

lH

ealt

hIm

pac

t

Pro

file

(OH

IP-1

4)

Bre

nnan

etal

.[4

4]

EQ

-5D

All

com

ponen

ts(a

ll14

item

s)F

unct

ional

lim

itat

ion,

Physi

cal

dis

abil

ity,

Han

dic

ap

Usu

alac

tivit

ies

–M

obil

ity,

Sel

f-ca

re

Physi

cal

pai

nP

ain/D

isco

mfo

rt

Psy

cholo

gic

aldis

com

fort

,

Psy

cholo

gic

aldis

abil

ity,

Soci

aldis

abil

ity

Anxie

ty/D

epre

ssio

n

868 Qual Life Res (2013) 22:853–874

123

Ta

ble

3co

nti

nu

ed

Dis

ease

/

condit

ion

Par

ent

mea

sure

(DS

M)

Publi

cati

on

refe

rence

Val

uat

ion

tech

niq

ue

Dim

ensi

ons

of

DS

Min

volv

edin

final

(or

most

reco

mm

ended

)

DS

PM

Conte

nt

val

idit

yev

aluat

ion

wit

hD

SP

Man

dE

Q-5

D

Over

lappin

gof

DS

PM

and

EQ

-5D

Dim

ensi

ons

on

DS

PM

mis

sing

from

EQ

-5D

Dim

ensi

ons

on

EQ

-5D

mis

sing

from

DS

PM

Dim

ensi

ons

on

DS

PM

cover

edby

EQ

-5D

Dim

ensi

onal

equiv

alen

tin

EQ

-5D

Ere

ctil

e

dysf

unct

ion

Inte

rnat

ional

Index

of

Ere

ctil

eD

ysf

unct

ion

(IIE

F)

Sto

lket

al.

[12]

TT

OA

bil

ity

toat

tain

and

mai

nta

inan

erec

tion

suffi

cien

tfo

rsa

tisf

acto

ry

sexual

per

form

ance

(Ques

tion

3

and

4in

IIE

F)

––

Abil

ity

toat

tain

and

mai

nta

inan

erec

tion

suffi

cien

tfo

r

sati

sfac

tory

sexual

per

form

ance

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-

care

,P

ain/

Dis

com

fort

,

Anxie

ty/

Dep

ress

ion

Flu

shin

gF

lush

ing

Sym

pto

ms

Ques

tionnai

re(F

SQ

)

Young

etal

.[1

6]

TT

OR

ednes

sof

skin

,W

arm

th,

Tin

gli

ng,

Itch

ing,

Sle

epdif

ficu

lty

Sle

epdif

ficu

lty

Red

nes

sof

skin

,W

arm

th,

Tin

gli

ng,

Itch

ing

Usu

alac

tivit

ies

Pai

n/D

isco

mfo

rt

–M

obil

ity,

Sel

f-

care

,A

nxie

ty/

Dep

ress

ion

Gro

wth

horm

one

defi

cien

cy

(GH

D)

QoL

Ass

essm

ent

of

Gro

wth

Horm

one

Defi

cien

cyin

Adult

s

ques

tionnai

re(Q

oL

-

AG

HD

A)

Kolt

ow

ska-

Hag

gst

rom

etal

.

[45]

EQ

-5D

All

com

ponen

ts(Q

oL

-AG

HD

Aas

a

single

score

)

Pro

ble

ms

wit

hm

emory

and

conce

ntr

atio

n,

tire

dnes

s

Ten

senes

s

Usu

alac

tivit

ies

Anxie

ty/D

epre

ssio

n

Soci

alis

ola

tion,

Sel

f-

confi

den

ce

Mobil

ity,

Sel

f-ca

re

Hydro

cephal

us

Hydro

cephal

us

Outc

om

e

Ques

tionnai

re(H

OQ

)

Kulk

arni

[10]

HU

I2A

llco

mponen

tsP

hysi

cal

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re,

Pai

n/D

isco

mfo

rt

Cognit

ive

–

Soci

al–em

oti

onal

Anxie

ty/D

epre

ssio

n

Infl

amm

atory

bow

eldis

ease

(i.e

.,C

rohn’s

dis

ease

)

Infl

amm

atory

Bow

el

Dis

ease

Ques

tionnai

re

(IB

DQ

)

Buxto

net

al.

[46]

EQ

-5D

,

SF

-6D

All

com

ponen

ts(I

BD

Qas

anin

dex

score

)

Bow

elsy

mpto

ms,

Syst

emic

sym

pto

ms

Pai

n/D

isco

mfo

rt–

Mobil

ity,

Sel

f-ca

re

Em

oti

onal

funct

ion

Anxie

ty/D

epre

ssio

n

Soci

alfu

nct

ion

Usu

alac

tivit

ies

Cro

hn’s

Dis

ease

Act

ivit

y

Index

(CD

AI)

All

com

ponen

ts(C

DA

Ias

anin

dex

score

)

Item

sdes

crib

ing

sym

pto

ms

in

Cro

hn’s

dis

ease

Pai

n/D

isco

mfo

rt–

Mobil

ity,

Sel

f-

care

,U

sual

acti

vit

ies,

Anxie

ty/

Dep

ress

ion

Men

opau

seQ

ual

iPau

seIn

ven

tory

(QP

I)

Bra

zier

etal

.[1

3]

TT

OA

llco

mponen

tsP

sych

olo

gic

alA

nxie

ty/D

epre

ssio

nS

exual

,M

enst

rual

,

Andro

gen

ic

com

pla

ints

Mobil

ity,

Sel

f-ca

re

Usu

alac

tivit

ies

Physi

cal,

Vas

om

oto

rP

ain/D

isco

mfo

rt

Men

tal

hea

lth

Gen

eral

Hea

lth

Ques

tionnai

re(G

HQ

-

12)

Ser

rano-A

guil

ar

etal

.[4

7]

EQ

-5D

All

com

ponen

tsR

ecen

tsy

mpto

ms,

Fee

ling,

Beh

avio

r

Usu

alac

tivit

ies,

Anxie

ty/

Dep

ress

ion

–P

ain/D

isco

mfo

rt,

Mobil

ity,

Sel

f-

care

Obes

ity

Impac

tof

Wei

ght

on

Qual

ity

of

Lif

e-L

ite

(IW

QO

L-l

ite)

Bra

zier

etal

.[2

7]

SF

-6D

All

com

ponen

tsP

hysi

cal

funct

ion,

Work

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

Sel

f-es

teem

,S

exual

life

Pai

n/D

isco

mfo

rt

Publi

cdis

tres

sA

nxie

ty/D

epre

ssio

n

Moore

hea

d-A

rdel

tII

ques

tionnai

re(M

A-I

I)

Sau

erla

nd

etal

.

[29]

EQ

-5D

,

SF

-6D

Mood,

Physi

cal

funct

ion,

Soci

al

rela

tionsh

ips,

Abil

ity

tow

ork

,

Sex

ual

ity

(sam

efo

rm

appin

gw

ith

EQ

-5D

and

map

pin

gw

ith

SF

-6D

)

Physi

cal

funct

ion,

Abil

ity

to

work

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

Soci

alre

lati

onsh

ips,

Sex

ual

ity

Pai

n/D

isco

mfo

rt

Mood

Anxie

ty/D

epre

ssio

n

Ocu

lar

dis

ease

Vis

ual

acuit

y(m

easu

red

usi

ng

the

Snel

len

eye

char

t)

Shar

ma

etal

.[4

8]

TT

OV

isual

acuit

y(s

ingle

item

)–

–V

isual

acuit

yU

sual

acti

vit

ies,

Mobil

ity,

Sel

f-

care

,A

nxie

ty/

Dep

ress

ion,

Pai

n/D

isco

mfo

rt

Qual Life Res (2013) 22:853–874 869

123

Ta

ble

3co

nti

nu

ed

Dis

ease

/

condit

ion

Par

ent

mea

sure

(DS

M)

Publi

cati

on

refe

rence

Val

uat

ion

tech

niq

ue

Dim

ensi

ons

of

DS

Min

volv

edin

final

(or

most

reco

mm

ended

)

DS

PM

Conte

nt

val

idit

yev

aluat

ion

wit

hD

SP

Man

dE

Q-5

D

Over

lappin

gof

DS

PM

and

EQ

-5D

Dim

ensi

ons

on

DS

PM

mis

sing

from

EQ

-5D

Dim

ensi

ons

on

EQ

-5D

mis

sing

from

DS

PM

Dim

ensi

ons

on

DS

PM

cover

edby

EQ

-5D

Dim

ensi

onal

equiv

alen

tin

EQ

-5D

Ost

eoar

thri

tis

Wes

tern

Onta

rio

and

McM

aste

rU

niv

ersi

ty

Ost

eoar

thri

tis

Index

(WO

MA

C)

Gro

ote

ndors

tet

al.

[49]

HU

I3A

llco

mponen

tsP

ain,

Sti

ffnes

s

Physi

cal

funct

ion

Pai

n/D

isco

mfo

rt

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

–A

nxie

ty/

Dep

ress

ion

Bar

ton

etal

.[5

0]

EQ

-5D

All

com

ponen

ts(W

OM

AC

asan

index

score

)

Xie

etal

.[5

1]

EQ

-5D

All

com

ponen

ts

Oti

tis

med

ia

wit

hef

fusi

on

(OM

E)

OM

E-s

pec

ific

Oti

tis

Med

iaQ

ues

tionnai

re

(OM

8-3

0)

Dak

inet

al.

[52

]H

UI3

All

com

ponen

tsR

espir

atory

sym

pto

ms,

Ear

pro

ble

ms

Pai

n/D

isco

mfo

rtP

aren

tqual

ity

of

life

Mobil

ity,

Sel

f-ca

re

Rep

ort

edhea

ring

dif

ficu

ltie

s,

Beh

avio

r,S

leep

,S

chool

pro

spec

ts,

Spee

chan

d

languag

e

Usu

alac

tivit

ies,

Anxie

ty/

Dep

ress

ion

Glo

bal

hea

lth

Over

acti

ve

bla

dder

Over

acti

ve

Bla

dder

Ques

tionnai

re(O

AB

-

q)

Yan

get

al.

[9]

TT

OU

rge

touri

nat

e,U

rine

loss

,

Sle

epim

pac

t,C

opin

gst

rate

gy,

Conce

rnw

ith

OA

B

Sle

epim

pac

t

Conce

rnw

ith

OA

B

Urg

eto

uri

nat

e,U

rine

loss

Usu

alac

tivit

ies

Anxie

ty/D

epre

ssio

n

Pai

n/D

isco

mfo

rt

Copin

gst

rate

gy

Mobil

ity,

Sel

f-ca

re

Pai

n(b

ack

and

leg)

Osw

estr

yD

isab

ilit

y

Index

(OD

I)/B

ack

Pai

n

Num

eric

Rat

ing

Sca

le

(BP

NR

S)/

Leg

Pai

n

Num

eric

Rat

ing

Sca

le

(LP

NR

S)

Car

reon

etal

.[5

3]

SF

-6D

All

com

ponen

ts(O

DI

asan

index

score

)

Bac

k-s

pec

ific

funct

ions,

Sin

gle

item

des

crib

ing

level

of

bac

k/l

egpai

n

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re,

Pai

n/D

isco

mfo

rt

–A

nxie

ty/

Dep

ress

ion

Par

kin

son’s

Dis

ease

(PD

)

Par

kin

son’s

Dis

ease

Ques

tionnai

re(P

DQ

-8)

Cheu

ng

etal

.[5

4]

EQ

-5D

Mobil

ity,

Act

ivit

ies

of

dai

lyli

vin

g,

Em

oti

onal

wel

l-bei

ng,

Cognit

ion,

Bodil

ydis

com

fort

Mobil

ity,

Act

ivit

ies

of

dai

ly

livin

g

Bodil

ydis

com

fort

Em

oti

onal

wel

l-bei

ng

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

Pai

n/D

isco

mfo

rt

Anxie

ty/D

epre

ssio

n

Cognit

ion

–

Pulm

onar

y

hyper

tensi

on

Cam

bri

dge

Pulm

onar

y

Hyper

tensi

on

Outc

om

e

Rev

iew

(CA

MP

HO

R)

QoL

scal

e

McK

enna

etal

.

[19]

TT

OA

llco

mponen

tsS

oci

alac

tivit

ies,

Com

munic

atio

ns

Usu

alac

tivit

ies

–P

ain/D

isco

mfo

rt,

Anxie

ty/

Dep

ress

ion

Tra

vel

ing

Mobil

ity

Dep

enden

ceS

elf-

care

Rheu

mat

oid

arth

riti

s

Hea

lth

Ass

essm

ent

Ques

tionnai

re

Dis

abil

ity

Index

(HA

Q-D

I)

Ban

sbac

ket

al.

[55]

EQ

-5D

,

SF

-6D

Dre

ssin

g,

Ari

sing,

Eat

ing,

Wal

kin

g,

Hygie

ne,

Rea

ch,

Gri

p,

Act

ivit

ies

Dre

ssin

g,

Ari

sing,

Eat

ing,

Wal

kin

g,

Hygie

ne,

Rea

ch,

Gri

p,

Act

ivit

ies

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

–P

ain/D

isco

mfo

rt,

Anxie

ty/

Dep

ress

ion

Hea

lth

Ass

essm

ent

Ques

tionnai

re(H

AQ

)

Wolf

eet

al.

[56]

US

EQ

-

5D

,U

K

EQ

-5D

,

SF

-6D

All

com

ponen

tsan

dV

AS

pai

n

score

(as

anad

dit

ional

var

iable

)

Dre

ssin

g,

Ari

sing,

Eat

ing,

Wal

kin

g,

Hygie

ne,

Rea

ch,

Gri

p,

Act

ivit

ies

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

–A

nxie

ty/

Dep

ress

ion

VA

Spai

nsc

ore

Pai

n/D

isco

mfo

rt

Hea

lth

Ass

essm

ent

Ques

tionnai

re

Dis

abil

ity

Index

(HA

Q-D

I)

Car

reno

etal

.[5

7]

HU

I3

EQ

-5D

All

com

ponen

ts(H

AQ

-DI

asan

index

score

)

Dre

ssin

g,

Ari

sing,

Eat

ing,

Wal

kin

g,

Hygie

ne,

Rea

ch,

Gri

p,

Act

ivit

ies

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

–P

ain/D

isco

mfo

rt,

Anxie

ty/

Dep

ress

ion

870 Qual Life Res (2013) 22:853–874

123

Ta

ble

3co

nti

nu

ed

Dis

ease

/

condit

ion

Par

ent

mea

sure

(DS

M)

Publi

cati

on

refe

rence

Val

uat

ion

tech

niq

ue

Dim

ensi

ons

of

DS

Min

volv

edin

final

(or

most

reco

mm

ended

)

DS

PM

Conte

nt

val

idit

yev

aluat

ion

wit

hD

SP

Man

dE

Q-5

D

Over

lappin

gof

DS

PM

and

EQ

-5D

Dim

ensi

ons

on

DS

PM

mis

sing

from

EQ

-5D

Dim

ensi

ons

on

EQ

-5D

mis

sing

from

DS

PM

Dim

ensi

ons

on

DS

PM

cover

edby

EQ

-5D

Dim

ensi

onal

equiv

alen

tin

EQ

-5D

Sch

izophre

nia

Posi

tive

and

Neg

ativ

e

Sym

pto

mS

cale

(PA

NS

S)

Len

ert

etal

.[5

8]

SG

,V

AS

All

com

ponen

tsP

osi

tive

psy

chopat

holo

gy,

Neg

ativ

epsy

chopat

holo

gy,

Gen

eral

psy

chopat

holo

gy

Anxie

ty/D

epre

ssio

n,

Usu

al

acti

vit

ies,

Sel

f-ca

re,

Pai

n/

Dis

com

fort

–M

obil

ity

Sle

epdis

ord

ers

Sle

epP

roble

mIn

dex

-II

(SL

P9)

Yan

get

al.

[59]

SF

-6D

All

com

ponen

ts(S

LP

9as

anin

dex

score

)

Sle

epin

itia

tion

pro

ble

ms,

slee

pm

ainte

nan

ce

pro

ble

ms,

resp

irat

ory

pro

ble

ms

duri

ng

slee

p,

slee

p

adeq

uac

y,

som

nole

nce

Usu

alac

tivit

ies,

Pai

n/

Dis

com

fort

–M

obil

ity,

Sel

f-

care

,A

nxie

ty/

Dep

ress

ion

Str

oke

Bar

thel

Index

Mort

imer

etal

.

[60]

AQ

oL

[Index

-bas

edal

gori

thm

]:A

ll

com

ponen

ts(a

san

index

score

)

[Ite

m-b

ased

algori

thm

]:

Fee

din

g,

Dre

ssin

g,

Bat

hin

g,

Sta

irs,

Bla

dder

Fee

din

g,

dre

ssin

g,

gro

om

ing,

bat

hin

g,

toil

etuse

,tr

ansf

er,

stai

rs,

mobil

ity,

bla

dder

,

bow

els

Usu

alac

tivit

ies,

Mobil

ity,

Sel

f-ca

re

–P

ain/D

isco

mfo

rt,

Anxie

ty/

Dep

ress

ion

Modifi

edR

ankin

scal

e

(mR

S)

Riv

ero-A

rias

etal

.

[61]

EQ

-5D

Lev

elof

han

dic

ap(s

ingle

item

)L

evel

of

han

dic

ap(a

ctiv

ity

lim

itat

ions

and

life

style

chan

ges

)

Usu

alac

tivit

ies,

Mobil

ity

–P

ain/D

isco

mfo

rt,

Anxie

ty/

Dep

ress

ion

Ulc

erat

ive

coli

tis

(UC

)

Ulc

erat

ive

Coli

tis

Dis

ease

Act

ivit

yIn

dex

(UC

DA

I)

Poole

etal

.[2

1]

EQ

-5D

Sto

ol

freq

uen

cy,

Rec

tal

ble

edin

g,

Physi

cian

glo

bal

asse

ssm

ent

Sto

ol

freq

uen

cy,

rect

al

ble

edin

g,

physi

cian

glo

bal

asse

ssm

ent

Usu

alac

tivit

ies,

Pai

n/

Dis

com

fort

–M

obil

ity,

Sel

f-

care

,A

nxie

ty/

Dep

ress

ion

Uri

nar

y

inco

nti

nen

ce

Kin

g’s

Hea

lth

Ques

tionnai

re(K

HQ

)

Bra

zier

etal

.[2

0]

SG

Role

lim

itat

ions,

Physi

cal

lim

itat

ions,

Soci

alfu

nct

ionin

g,

Em

oti

ons,

Sle

ep/e

ner

gy

Role

lim

itat

ions,

Physi

cal

funct

ionin

g,

Soci

al

funct

ionin

g,

Sle

ep

dis

turb

ance

Usu

alac

tivit

ies

–P

ain/D

isco

mfo

rt,

Mobil

ity,

Sel

f-

care

Em

oti

onal

pro

ble

ms

Anxie

ty/D

epre

ssio

n

Gen

eral

hea

lth

*S

oci

alw

ell-

bei

ng

item

sar

enot

expli

citl

yin

cluded

inE

Q-5

D,

det

erm

ined

bas

edon

how

they

are

des

crib

edin

the

dis

ease

-spec

ific

mea

sure

(DS

M).

For

exam

ple

,tw

oit

ems

of

soci

alw

ell-

bei

ng

inF

AC

T-L

are

the

foll

ow

ing:

‘‘I

get

emoti

onal

support

from

my

fam

ily’’

and

‘‘I

get

support

from

my

frie

nds.

’’

Qual Life Res (2013) 22:853–874 871

123

measurement. For example, the EQ-5D dimension of pain/

discomfort may broadly capture discomfort as it relates to

many conditions, but it fails to encapsulate the nature of the

symptoms or the extent of discomfort or pain, either

descriptively or in terms of magnitude of disutility which

also may be related to the number of levels per dimension.

Likewise, although the EQ-5D anxiety/depression dimen-

sion covers content related to aspects of mental health, it is

unclear if it adequately captures mental health issues

related to stigma, lack of motivation, inability to cope, and

lack of self-confidence or self-esteem. Moreover, family or

leisure activities are illustrated as usual activities on the

EQ-5D questionnaire, which demonstrates that EQ-5D

could generally incorporate the assessment of social func-

tioning (or even sexual function) into the domain of usual

activities. Finally, cognitive functioning can be another

example where symptoms of cognitive impairment (e.g.,

attention and remembering difficulties) might be taken into

account when patients evaluate their status of performing

usual activities. The last two examples indicate that EQ-5D

has potential to lose sensitivity in identifying problems

related to social activities or cognitive functioning.

There has already been some investigation on the addition

of dimensions of social activities and cognitive functioning

to the EQ-5D. The EQ-5D originally had six dimensions

(EQ-6D) and included a specific dimension of ’’Social

relationships.’’ However, after investigation, it was found to

contribute little to the valuation of the health states and so

was combined with a dimension of ‘‘main activities’’ to form

the ‘‘Usual activities’’ in the EQ-5D [30]. In addition, the

impact of adding a cognition dimension to the EQ-5D has

had mixed results between studies [31, 32]. However, these

previous findings are not conclusive and further investiga-

tion of these dimensions as bolt-ons could be useful.

The extent to which these dimensions may or may not

be covered by the EQ-5D can be examined to some extent

by using existing data sets in which both the EQ-5D and

the disease-specific measures have been administered.

Psychometric analysis such as factor analysis and item

response theory-based models can be employed to under-

stand the extent to which items overlap and are related to

the same construct/dimension. If the ultimate goal is to

identify bolt-on content that is a significant predictor of

overall utility for health, then subsequent studies that col-

lect and model utilities are needed that may or may not

substantiate it. While numerous studies of DSPMs have

been published in recent years, their proliferation may be

attributed both to the goal of improving upon the properties

of generic utility measures as well as for other purposes,

such as developer desire to make a disease-specific mea-

sure simply to appear more attractive for use to industry or

motivated by the need to generate utility scores when a

utility measure is omitted from a trial.

The study is limited to DSPMs that were already

developed. The study is also limited by addressing face

validity qualitatively; other psychometric properties like

construct validity and responsiveness should be considered

as well when assessing measures of health. Our ability to

identify candidate conditions and dimensions external to

the core EQ-5D was limited by the choice of disease-spe-

cific measures and the methodological approaches used to

select items from the parent measures. Without gold stan-

dard measures available, it is difficult to establish situations

when EQ-5D does or does not capture the important

aspects of disease. If a relationship between the DSM and

generic utility cannot be adequately established, it does not

necessarily mean the utility measure is flawed. Instead, it

could be that the DSM itself is not sufficient or some

aspects of health are not valued to the extent that they

uniquely and meaningfully contribute to an overall utility

score. We focused on the content of the DSPM as it related

the EQ-5D and to a much lesser extent on the performance

of mapping functions. Poor prediction of mapping func-

tions can arise from a variety of contexts; for example,

limited health states described by EQ-5D’s 5-question,

3-level format can possibly lead to inaccurate discrimina-

tion of health status [33]. For a methodological appraisal of

this literature that emphasizes the performance of mapping

functions, see Brazier et al. [6].

In summary, this review was intended to help to identify

dimensions that could potentially be added to the EQ-5D

core for the purpose of developing disease-specific ‘‘bolt-

ons’’ or extension of the descriptive system in the future.

Based on the literature at present, the exploration of bolt-

ons is still a rich area for exploration. The pursuit of such

bolt-ons, which is of strategic and scientific interest to

many stakeholders in health care, is an opportunity and a

challenge for researchers with interest in utility measure-

ment. The development of a DSPM can be as time- and

resource consuming as the development of a new generic

measure such as the EQ-5D-5L, as labeling, content, and

utility algorithms need to be addressed. For these reasons,

the bolt-on agenda can be viewed as a long-term initiative

that requires extensive resources and deliberation.

Acknowledgments Simon Pickard and Louise Longworth are

members of the EuroQol Group. An earlier draft of this manuscript

was presented as a discussion paper at the 27th EuroQol Plenary

Meeting in Athens, Greece, in September, 2010.

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