can a “prompt list” empower cancer patients to ask relevant questions?

Can a ‘‘Prompt List’’ Empower Cancer Patientsto Ask Relevant Questions?

Aneta Dimoska, PhD1

Martin H.N. Tattersall, MD1,2

Phyllis N. Butow, PhD1,3

Heather Shepherd, BA1

Paul Kinnersley, MD4

1 Medical Psychology Research Unit, BlackburnBuilding, University of Sydney, Sydney, New SouthWales, Australia.

2 Department of Cancer Medicine, BlackburnBuilding, University of Sydney, Sydney, New SouthWales, Australia.

3 School of Psychology, Brennan MacCallumBuilding (A18), University of Sydney, Sydney, NewSouth Wales, Australia.

4 Department of Primary Care and Public Health,Neuadd Merrionydd, Cardiff University, Cardiff,Wales, United Kingdom.

E ncouraging cancer patients to actively participate and ask ques-

tions in their consultation is important so that they can achieve

a greater understanding of, and take a more autonomous role in,

their medical care. A number of positive patient psychological out-

comes have been linked with greater patient participation including

greater satisfaction with the consultation, lower levels of anxiety and

distress, and overall resolution of symptoms.1–3 Although most can-

cer patients express a desire for full information about their illness

and treatment,4 often they are uncertain about what they should

ask their physicians. Equally, clinicians may not be sure of the type

and degree of information the patient would like and providing too

much or too little information may leave the patient feeling dis-

tressed.4 Communication interventions aid in this regard by helping

patients to identify concerns and questions they may have about

their diagnosis and treatment, and by encouraging them to seek in-

formation and answers. Patient-centered approaches include coach-

ing either face-to-face or via interactive multimedia,5,6 or providing

patients with decision aids,7 question prompt lists,8 or audiorecord-

ings of consultations for review.9,10

Question prompt lists (QPLs) are an inexpensive means of facili-

tating communication between patients and physicians consisting

of a structured list of questions that patients may wish to ask their

physician about illness and treatment. Evidence-based lists are typi-

cally derived from content analyses of physician-patient interac-

tions11 or from focus groups and interviews with patient and health

professionals.12 Patients are typically given the QPL before their

consultation to read through and determine which questions they

would like answers to. Versions of the QPL have been utilized in a

number of healthcare contexts including cancer,8 diabetes,13 coro-

nary disease,14 geriatric medicine,15 general practice,16 gynecological

and dermatological problems,17 surgical patients,18 and parents of

children with neurological problems.19

Since 1994, we3,8,11,20–22 and others23–25 have reported on a

number of randomized controlled trials (RCTs) that have examined

the effectiveness of a QPL in encouraging cancer patients to seek

more information about their illness and care. Others have exam-

ined the utility of the QPL for cancer patients in uncontrolled or

implementation studies.12,26–31 As the QPL is a relatively simple and

inexpensive intervention to implement into routine care, demanding

little financial and staffing resources to distribute the pamphlet to

cancer patients, a review of the findings to date is warranted to

assess the likely benefits and costs of a large-scale implementation.

There are a few systematic reviews that have reported on the effec-

There were no conflicts of interest, financial orotherwise.

Two of the authors were authors of 8 studiesincluded in this review.

Address for reprints: Aneta Dimoska, MedicalPsychology Research Unit, Faculty of Medicine,Blackburn Building (D06), University of Sydney,NSW 2006, Australia; Fax: (011) 61 2 90365420; E-mail: [email protected]

Received October 16, 2007; revision receivedJanuary 9, 2008; accepted February 11, 2008.

ª 2008 American Cancer SocietyDOI 10.1002/cncr.23543Published online 16 May 2008 in Wiley InterScience (www.interscience.wiley.com).

225

tiveness of various patient communication aid inter-

ventions, including QPLs, in a range of clinical set-

tings.32–34 However, these are not specific to the

cancer setting. In a recent Cochrane review, 33 RCTs

were reviewed and 9 of these pertained to cancer

patients.34 Overall, they found interventions pro-

duced limited benefits to patients, but suggested that

they may be more useful for particular patients.

Parker et al.9 gave a brief review of the use of QPLs

in a cancer setting and found that they were well

received by patients and providers and that they may

increase specific types of questions asked regarding

disease and treatment.

Use of the QPL in noncancer settings have

shown variable results. For example, the QPL had no

or little effect on the number of questions asked by

diabetic patients34 and on self-reported patient invol-

vement by patients with coronary artery disease

(CAD)34 and geriatric patients in primary care15,16;

however, a QPL to help patients about to undergo

surgery in making an informed choice between gen-

eral and regional anesthesia was found to signifi-

cantly increase question-asking in the consultation.18

It has been suggested that lack of effects in the

former studies were due to the use of a general QPL

containing questions that were not directly relevant

to patients, and that disease-specific interventions

may have more success in improving patient involve-

ment. Furthermore, the utility of QPLs may be differ-

ent for patients who, confronted with serious

decisions and uncertain outcomes, may have greater

needs for information and perhaps greater difficulty

expressing these needs.

We aim to review findings of reported studies to

date to examine whether a simple QPL empowers

cancer patients to participate more and ask relevant

questions of their physician in the medical consul-

tation, and whether this in turn is associated with

positive psychological outcomes for the patient.

MATERIALS AND METHODSSearch StrategyA review of the literature was performed to identify

both controlled and noncontrolled studies that have

examined the effectiveness of the QPL in encoura-

ging cancer patients to communicate and be more

involved in their consultation with their physician. A

literature search was performed using the databases

PsychINFO, CINAHL, and MEDLINE from the year

1965 to 2006. Searches were based on the following

strategy:

1. prompt sheet OR checklist OR helpcard OR card

2. question AND list

3. patient participation

4. patient involvement

5. communication aid

6. intervention

7. cancer OR oncology

8. (3 OR 4) AND (5 OR 6) AND 7

Searches were also performed on key authors in

the area and the reference lists of all located articles

were scanned for additional relevant articles. All

searches were conducted in English and the only

studies identified by the search were in English.

Selection CriteriaStrict selection criteria were adopted to focus the

review on the effectiveness of QPLs in facilitating

communication for cancer patients in consultations.

Studies were included if they satisfied criteria in 3

categories: participant population, intervention, and

outcome measures. The participant population was

limited to patients diagnosed with cancer. The inter-

vention had to be: a written prompt directed toward

the patient, designed to encourage the patient to

participate in the medical consultation, and provided

preconsultation. At least 1 of the outcome measures

had to be related to communication between

patients and physicians. Based on these criteria, 1

study was excluded because the only outcome meas-

ured was patient satisfaction,27 and another because

the QPL was specific to helping patients find out

about clinical trials.35 Abstracts and unpublished stu-

dies were excluded.36 Studies were included if a QPL

was provided to patients as part of a larger commu-

nication intervention (eg, decision aids, information

booklets, or coaching).

MeasuresBecause of the small number of RCT studies and the

large variation in outcome measures between them

a meta-analysis could not be performed. Objective,

subjective, and psychometric measures were assessed

separately. Communication-related measures inclu-

ded frequency and likelihood of patient question

asking coded from recorded consultations, patient

self-report of questions asked, whether the QPL

aided communication with the physician, perceived

helpfulness or usefulness, and match between pre-

ferred and perceived participation roles in the con-

sultation. Patient psychological outcomes derived

from psychometric measures included anxiety, satis-

faction with the consultation, depression, and psy-

chological adjustment. Patient recall of medical

information postconsultation was also reported.

226 CANCER July 15, 2008 / Volume 113 / Number 2

Potential costs of implementing the QPL into routine

care were assessed via the effect of the QPL on the

duration of the consultation.

RESULTSOverviewThe review identified 15 studies (n 5 2159), includ-

ing 9 randomized-controlled studies,3,8,11,20–25 2 sequen-

tial time-controlled studies,26,31 and 4 uncontrolled or

observational studies.12,28–30 Table 1 outlines the

methodology and design characteristics of the stu-

dies. Controlled studies compared patients who

received the QPL with patients who received usual

care or a general information sheet. Uncontrolled

studies included 1 using a within-subject, pre- versus

post-test design,28 2 examining the development of

the QPL,12,30 and another reporting on the imple-

mentation of the QPL at a cancer clinic over the

course of 1 year.29 Gattellari et al.3 used a subset of

the sample in Brown et al.8 All but 1 study were pub-

lished in the last decade.

QPL Development and StructureThe number of questions contained in the QPL var-

ied dramatically between studies. Questions were

generally divided under subject headings such as:

diagnosis, tests, treatment, prognosis, history/symp-

toms, and support, among others. QPLs were either

developed from content analyses of physician-patient

interactions,11 data collected from focus groups and

interviews with patients and cancer health profes-

sionals,12,30 or were individually tailored to patients’

specific concerns.24–26,28,31

Sample CharacteristicsIn the controlled studies the number of patients

sampled ranged from 60 to 749 (median, 103; mean,

171.6; see Table 1). Across all studies the mean or

median age of patients was equal to or greater than

50 years. In studies including both male and female

patients, the average proportion of males was 49.8%.

All but 6 studies reported the education level of

patients, showing that an average of 68.3% patients

had completed secondary school. Many samples

were heterogeneous, including breast, lung, testis,

prostate, colorectal, and other cancer types. The lar-

gest proportion across studies included (in descend-

ing order) patients with breast, gastrointestinal, and

skin cancer. Participants were commonly at an early

disease stage as opposed to metastatic, and the prog-

nosis of the patients was typically in the order of

years (ie, 1–5 years), except with studies examining

palliative care patients.12,22

Communication Outcome MeasuresTable 2 lists the objective and subjective communica-

tion measures for RCT and uncontrolled studies. Six

studies reported the frequency of patient question-

asking measured from recorded transcribed consul-

tations that were coded by a third party. Reported

interrater agreement was high in these studies,

between 0.7 and 0.9. Subjective self-report measures

were reported in all 15 identified studies and

included whether the patient generally perceived the

QPL to be ‘‘helpful’’ or ‘‘useful,’’ whether it ‘‘aided

communication’’ with their physician, and whether

their perceived participation role in the medical con-

sultation matched their preferred role.

Frequency of patient questionsThree out of 6 RCT studies measuring total patient

questions found a significant difference between QPL

and control groups,11,20,22 and all 6 studies found

that the QPL increased question-asking about speci-

fic topics.8,11,20–23 Patients seeing a medical or radia-

tion oncologist who did not receive a QPL most

commonly asked questions in consultation about

treatment, followed by diagnosis.8,11,21,23 The QPL

prompted greater questions about tests,11 diagno-

sis,23 and prognosis.8,20 Control patients seeing palli-

ative care physicians predominantly asked questions

regarding available support systems and end-of-life

issues,22 while patients using a QPL asked questions

about the palliative care service and team, lifestyle

and quality-of-life, the illness, and what to expect in

the future, as well as support.

Some studies found no overall difference

between QPL and control groups in patient questions

but still found increased question-asking about par-

ticular topics, such as diagnosis and prognosis.8,23 A

closer examination of questions by category-type

revealed a reduction in treatment and disease history

questions in the QPL groups.8 Although treatment

was still the most frequently asked-about topic, dis-

ease history dropped from the third most frequently

asked question in controls to the sixth most fre-

quently asked about topic in patients using a QPL.

This shows that the QPL may cause patients to shift

focus of attention away from disease history and, to

a lesser extent treatment, to concentrate more on

prognosis and diagnosis.

Three studies reported on the likelihood that a

QPL prompts a patient to ask at least 1 question

about prognosis.8,11,21 All studies found either a sig-

nificant effect or trend in favor of this effect. Brown

et al.8 found that although occupation, education,

age, and stage of disease were all related to fre-

quency of question-asking about prognosis, the QPL

Question Prompt Lists/Dimoska et al 227

TABLE

1Cha

racteristics

ofStud

yDesignan

dPa

tien

tPo

pulation

s

Stud

yCou

ntry

Design

Interven

tion

Patien

tch

arac

teristics

Participatingph

ysicians

Totaln

o.Ag

e,y

%Male

%High

scho

olDisea

setype

Brow

n8Au

stRC

TQPL

(17qu

estio

ns)

5med

ical,4

radiationon

cologists

320

5656

71Br

east,G

I,GU

Brue

ra23

US

RCT

QPL

(22qu

estio

ns)

med

ical

onco

logists

6054

097

Brea

ston

ly

Butow

21Au

stRC

TQPL

(11qu

estio

ns)

1med

ical

onco

logist

142

5116

nrMainlybrea

st

Butow

20Au

stRC

TCon

sulta

tionprep

arationpa

ck

(19qu

estio

ns)

2med

ical,2

radiationon

cologists

164

5846

62Mainlybrea

st,lun

g

Clayton

22Au

stRC

TQPL

(112

questio

ns)

15pa

lliativeca

reph

ysicians

174

6561

33Pa

lliativeca

re

Gattella

r3Au

stRC

TQPL

(17qu

estio

ns)

5med

ical,4

radiationon

cologists

233

5757

91Mainlybrea

st,c

olorec

tal

Ambler

26UK

Sequ

entia

lIndividu

ally

prep

ared

questio

ns1

supp

ort(no.

ofqu

estio

nsva

ried

)

nr10

350

0nr

Brea

st

Brow

n11

Aust

RCT

QPL

vsQPL

1co

aching

(17qu

estio

ns)

2med

ical

onco

logists

6053

4945

Mainlybrea

st

Dav

ison

&Deg

ner2

4Can

ada

RCT

QPL

1co

aching

1inform

ationpa

ck

1au

diotap

eof

cons

ultatio

n

(no.

oftopics

notrepo

rted

)

2urolog

ists

6068

100

42Pros

tate

Dav

ison

&Deg

ner2

5Can

ada

RCT

Com

puterge

neratedindividu

ally

prioritiz

edinform

ationca

tego

ries

(9topics)

3on

cology

outpatient

clinics

749

72%

>50

073

Brea

st

Sepu

cha3

1US

Sequ

entia

lIndividu

ally

prep

ared

questio

ns1

supp

ort(no.

ofqu

estio

nsva

ried

)

7on

cologists,

2su

rgeo

ns94

nr0

nrBr

east

Clayton

12Au

stDev

elop

men

tQPL

(112

questio

ns)

22pa

lliativeca

reph

ysicians

197<60

5884

Palliativeca

re

12>60

Dav

ison

&Deg

ner2

8Can

ada

Prevs

Post

Com

puterge

neratedindividu

ally

prioritiz

edinform

ationca

tego

ries

(9topics)

urolog

ists

7462

100

81Pros

tate

canc

er

Glynn

e-Jone

s29UK

Implem

entatio

nQPL

(22qu

estio

ns)

2co

nsultants,

2on

cology

registrars,

1ho

spita

lpractition

er

300

Med

ian67

55nr

Lung

,colorec

tal,

GI,urolog

ical

McJan

nett30

Aust

Dev

elop

men

tQPL

(59qu

estio

ns)

8su

rgeo

ns22

5550

72Melan

oma

QPL

indica

tesqu

estio

nprom

ptlis

t;RC

T,rand

omized

controlle

dtrial;nr,n

otrepo

rted

;age

(inye

ars)

refle

ctsmea

nag

eun

less

othe

rwiseindica

ted;

GI,ga

strointestinal;G

U,g

astrou

rinal.

TABLE

2Find

ings

ofObjec

tive

andSu

bjec

tive

Mea

suresof

Com

mun

icationforRCTan

dUnc

ontrolledStud

iesSe

parately

Stud

y

Gro

up

compa

riso

ns

Objec

tive

mea

sures

Subjec

tive

mea

sures

TotalQ

A

Sign

.of

totalQ

A

Que

stions

bytopic

Like

lihoo

dof

asking

1

question

Self-

repo

rted

question

-ask

ing

Helpfulne

ssor

usefulne

ss

Aids

commun

icationwith

doctor

Preferredor

rerceive

dro

le

RCTStud

ies

Brow

n11QPL

vsco

aching

Med

ian15

vs13

NS

QPL

(com

bine

dwith

coac

hing

)vs

CN

Mea

n14

vs8.5

P<.05

Tests:P<

.05

Prog

nosis:P5.09;

TestsP<.05

Brow

n8QPL

(com

bine

d)vs

CN

Mea

n10

.9vs

11.1

NS

Prog

nosis:P<.05

Prog

nosis:P5.058

QPL

vsQPL

1en

dorsevs

CN

Mea

n10

.8vs

11.0

vs11

.1

NS

Brue

ra23

QPL

vsCN

Mea

n8.7vs

10.3

NS

Diagn

osis

:P<.05

:P<.01

:P5.01

Butow

21QPL

vsCN

Mea

n5.5vs

nrNS

NS

Prog

nosis:P<.05

Butow

20QPL

vsCN

Mea

n13

vs9

P<.01

Prog

nosis:P<.01

Prog

nosis:P<.05

Approx

.67%

foun

d

theCCPP

extrem

elyor

very

useful

Role

mismatch

:

QPL

;vs

CN

P5.06

Clayton

22QPL

vsCN

Mea

n5.4vs

2.3

P<.000

1Pa

lliativeca

re:P<

.000

1;Lifestylean

d

QOL:P<.000

1;In

thefuture

:P<.01;

Supp

ort:P<.000

1

53%

repo

rted

QPL

prom

pted

questio

nasking

93%

foun

dQPL

helpfula

nd90

%

foun

ditus

eful

95%

foun

dQPL

mad

eitea

sier

to

askqu

estio

ns

CN

vsQPL

vsQPL

1en

dorsem

ent

Mea

n2.3vs

2.6

vs4.2vs

15.1

P<.000

1

Dav

ison

&Deg

ner2

4QPL

vsCN

QPL

:vs

CN

grou

pac

tivedu

ring

cons

ultatio

n(P

<.001

)

Dav

ison

&Deg

ner25

QPL

vsCN

:nu

mbe

rof

wom

enin

QPL

grou

p

assu

med

amorepa

ssiverole

inco

nsultatio

nthan

they

preferredpre-co

nsultatio

n

NSb/

wgrou

psin

assu

med

role

during

cons

ultatio

n

Gattella

ri3

QPL

vsCN

Inform

ation

exch

ange

NS

Role

mismatch

NS

Unc

ontrolledStud

ies

Ambler

26Duringco

nsultatio

n,ac

ross

allg

roup

s

(NS);b

utpa

tientswith

benign

lumps

in

QPL

:pe

rceive

dinvo

lvem

entthan

CN

(P<.05)

at6-mofollo

w-up

(con

tinue

d)

TABLE

2(con

tinu

ed)

Stud

y

Gro

up

compa

riso

ns

Objec

tive

mea

sures

Subjec

tive

mea

sures

TotalQ

A

Sign

.of

totalQ

A

Que

stions

bytopic

Like

lihoo

dof

asking

1

question

Self-

repo

rted

question

-ask

ing

Helpfulne

ss

orus

efulne

ss

Aids

commun

ication

withdo

ctor

Preferredor

perceive

dro

le

Clayton

1217

/20pa

tients

repo

rted

QPL

prom

pted

them

toask

questio

ns

19/20pa

tientsfoun

d

theQPL

helpful

andqu

estio

ns

useful

17/20pa

tients

repo

rted

QPL

mad

eitea

sier

to

askqu

estio

ns

20/23ph

ysicians

repo

rted

QPL

mad

eitea

sier

for

patie

ntsto

discus

s

endof

lifean

d

prog

nosis

Dav

ison

&Deg

ner28

:nu

mbe

rof

patie

ntstook

onan

activ

e

role

inco

nsultatio

n(78%

)than

numbe

r

repo

rtingthis

aspreferredrole

(58%

);

thos

ewho

preferredapa

ssiverole

(7%)

wereno

tprom

pted

tobe

comemore

activ

e

Glynn

e-Jone

s2933

%feltthat

were

able

toaskmore

questio

ns

88.6%

very

orfairly

helpfulo

ftho

se

that

remem

bered

QPL

McJan

nett30

15/15pa

tientsin

a

pilotrepo

rted

the

QPL

tobe

useful

Sepu

cha3

1Re

ductionin

commun

ication

barriers

was

simila

rin

both

grou

ps

QPL

indica

tesqu

estio

nprom

ptlis

t;RC

T,rand

omized

controlle

dtrial;sign

.,sign

ifica

nce;

CN,c

ontrol

grou

p;NS,

nots

ignific

ant;‘‘:

’’or

‘‘;’’QPL

grou

pwas

enha

nced

orredu

cedon

this

mea

sure,respe

ctively,

compa

redwith

theco

ntrolg

roup

,unlessothe

rwisesp

ecified

inthetable.

accounted for this effect over and above the other

variables. Although not published, Butow et al.20 also

found a significant effect for the likelihood of asking

a question about prognosis (Mann-Whitney U 52670.5, P < .05).

The increase in questions from control patients

to patients using the QPL was around 1.7 and 1.4

times in Brown et al.11 and Butow et al.,20 respec-

tively, for patients seeing an oncologist. In contrast,

Clayton et al.22 found patients in palliative care asked

2.3 times more ‘direct’ questions when given a QPL

compared with controls. Between these studies a

lower number of questions was asked by controls in

Clayton et al.22 (see Table 2), indicating that pallia-

tive care patients may have greater difficulty asking

questions and that the QPL may, therefore, be parti-

cularly useful to this group. Clayton et al.22 further

found that patient questions increased relative to

the level of physician endorsement of the QPL to

the patient. Compared with patients whose physi-

cian did not endorse the use of the QPL, patients

asked 1.6 and 5.8 times more questions when the

physician provided basic or extensive endorsement,

respectively. In fact, question-asking when there was

no endorsement of the QPL was similar to the con-

trol group. However, Brown et al.8 found no effect of

physician endorsement of the QPL on patient ques-

tions.

Perceived usefulnessBruera et al.23 found that patients rated the QPL as

significantly more helpful in aiding communication

with their physician compared with a general infor-

mation sheet. Two studies found no differences

between groups in the QPL’s effectiveness for ‘‘facili-

tating information exchange’’3 or ‘‘breaking down

communication barriers.’’31

Glynne-Jones et al.29 found that 88% reported

the QPL to be ‘very’ or ‘fairly’ helpful on a 5-point

scale of very helpful to completely unhelpful, with

less than 1% finding it ‘completely unhelpful.’ Clay-

ton et al.22 reported approximately 90% of patients

agreed the QPL was useful or helpful. Butow et al.20

found a more modest 67% of patients reported that a

cancer consultation preparation package containing

the QPL was ‘extremely’ or ‘very’ useful on a 5-point

scale, while 65% of patients reported that their family

found the material very useful.

Perceived role in consultationTwo studies found no effect of the QPL on the

patient’s perceived role in the consultation,25,26 while

1 study found that patients using a QPL felt they

took a more active role in consultation than that

reported by controls.24 When examining whether the

QPL affected the match between a patient’s preferred

role in consultation (measured preconsultation) and

their perceived actual role (measured postconsulta-

tion), the results were also conflicting, with 1 study

finding no effects,3 while other studies showed a

mismatch.20,25,28

Three studies reported on whether patients felt

that the QPL helped them ask more questions. In

Clayton et al.,12 17 out of 20 patients reported the

QPL encouraged them to ask more questions. In a

much larger study, only 33% of patients felt the QPL

helped them ask more questions.29 In Clayton

et al.,22 patients’ subjective perceptions of question-

asking were cross-checked with the objective mea-

sure taken from audiotaped consultations. Although

there was a significant difference between control

and QPL groups in overall frequency of question-ask-

ing, only 53% of patients responded ‘‘yes’’ when

asked did the QPL ‘‘prompt you to ask your physi-

cian any questions?’’ This is also contrasted with the

95% of patients who agreed that that the QPL ‘‘made

it easier to ask questions,’’ which, although worded

more broadly than the previous question, should

have resulted in a similar response rate. Inconsis-

tency in responses suggests that participants may

not be very good at accurately reporting their level of

participation during consultations.

Patient Psychological OutcomesTable 3 outlines the findings for patient psychological

outcomes and physician measures. Twelve studies

reported patient psychological outcome measures.

AnxietyThe QPL generally had no effect on anxiety either

immediately postconsultation,3 or at short- (1-

week)8,11 and long-term (1-month) follow-ups.20,22 In

some studies anxiety was shown to decrease after

receiving the QPL.24,28 One study found increased

anxiety in patients using the QPL immediately fol-

lowing their consultation relative to controls,

although this normalized at a 1-week follow-up, and

patients who received endorsement from their physi-

cian to use the QPL did not differ from controls.8

Depression and psychological adjustmentFive studies examined patient depression, distress, or

psychological adjustment and the QPL was found to

have no effect on these psychological outcomes.

Only Davison et al.28 found a reduction in depression

post- compared with preconsultation.


Satisfaction with consultationPatient satisfaction was the most common measure

across studies (11 out of 15 studies), although only 1

study found a significant difference between

groups.26 Physicians generally showed no difference

in satisfaction with the consultation between QPL

and control groups in all but 1 study. A closer exami-

nation of the patients’ scores in the controlled

studies revealed ceiling effects, whereby scores pre-

dominantly lay in the high range, with little between-

subject variability. This raises question about the

construct validity of the scales used to measure satis-

faction within an oncology setting.

Information RecallRecall of medical information by patients was meas-

ured in 3 studies via telephone interviews taken a

short period after the consultation, where patients

were asked to answer questions relating to medical

information they had received in their past consulta-

tion. Two studies found no effects of the QPL on

patient recall3,21 and 1 study found greater recall in

patients using a QPL only if they received endorse-

ment of question-asking by the physician.8 This

effect was greater in males than females.

Effects on Consultation DurationFive studies examined effects on the duration of the

consultation. Three studies found no duration

effects,20,21,23 while 1 study found an average reduc-

tion in consultation duration by 5 minutes when

doctors endorsed use of the QPL to their patients.8

Clayton et al.22 found a 7-minute increase in consul-

tation duration for patients in palliative care, but this

was believed to be due to the comprehensive nature

of the QPL (ie, 112 items) as well as the inclusion of

questions about end-of-life issues. Butow et al.21

TABLE 3Findings of Patient Psychological Outcomes and Doctor Measures for All Studies

Study Anxiety Patient satisfaction

Depression or psychological

adjustment Physician measures

Ambler26 ; in QPL than CN 2-wk

postsurgery but this

effect confounded by

cancer type (P < .05)

Patients with benign lumps

in QPL : satisfaction

(P 5 .07) at 2-wk follow-up

Distress NS

Brown11 NS post-consultation and

at 1-wk follow-up

NS NS

Brown8 QPL : vs QPL 1 endorse and

CN (P < .05) postconsultation;

NS at 1-wk follow-up

NS

Bruera23 NS Satisfaction NS

Butow21 NS NS

Butow20 QPL : at preconsultation (P < .05);

NS at postconsultation and

1-mo follow-up

NS Depression NS Satisfaction NS

Clayton12 QPL ; vs CN (no statistic)

All 23 physicians reported

QPL did not interrupt

consultation flow

Clayton22 NS at 24-hr and 3-wk follow-up NS Satisfaction NS

Davison & Degner24 State anxiety ; in QPL group

from pre- to 6-wk

postconsultation (P < .01)

Davison & Degner25 NS

Davison & Degner28 Post- ; vs preconsultation

(P < .001)

Satisfaction with doctor (NS) Depression post- ;vs pre-test (P < .05)

Gattellari3 NS NS

Glynne-Jones29

McJannett30

Sepucha31 Satisfaction with consultation:

QPL : than CN (P < .01)

QPL indicates question prompt list; CN, control group; NS, not significant; ‘‘:’’ or ‘‘;’’ QPL group was enhanced or reduced on this measure, respectively, compared with the control group, unless otherwise

specified in the table.


found that younger patients, females, and outpati-

ents spent more time asking more questions, and in

response, doctors spent more time overall talking to

these patients.

DISCUSSIONThis review found 15 studies that examined the

effectiveness of a simple-to-use QPL in empowering

cancer patients to participate and ask relevant ques-

tions during their consultation. Seven out of 9 RCT

studies and 5 out of 6 uncontrolled studies showed

some improvement in patient-physician communica-

tion as measured objectively through the number of

patient questions asked or subjectively through

patient self-report, and no effects were found on

patient psychological outcomes. Although the QPL

did not consistently increase the total number of

questions patients asked, it did empower patients in

all RCT studies to ask specific questions, particularly

regarding prognosis. This finding is in contrast to the

lack of positive effects found in noncancer studies

using a general QPL and suggests that cancer

patients may have greater information needs and/or

that a disease-specific QPL has greater utility and

relevance for patients. In particular, the review shows

that a disease-specific QPL is a useful tool for cancer

patients, providing them with a means of directing

the consultation toward issues that concern them.

The key finding in this review was that the QPL

increased the likelihood that a patient would ask at

least 1 question about prognosis, a topic that is typi-

cally avoided by both cancer patients and physicians

during consultation.37–39 A recent study showed that

cancer patients may instead broach these topics with

anonymous hospital staff who they come into con-

tact with.40 The et al.38 and Koedoot et al.39 suggest

that uninvolved information brokers may be useful

for discussing difficult topics with patients, and the

QPL could be used during these interactions also.

Nevertheless, the present findings show that a QPL

is effective in providing patients with a means of

bringing up prognostic issues with their physician,

without causing adverse psychological effects. The

influential factor may be that the QPL gives the

patient, in a sense, permission to ask their physician

these types of questions. This highlights the need

for greater endorsement of question-asking and use

of the QPL by physicians to make patients feel more

comfortable with this process.38

A number of deficiencies in the literature are

apparent from this review and are summarized in

Table 4. For example, the optimal number of ques-

tions or topics in the QPL required to increase ques-

tion-asking has not yet been determined. While

Butow et al.21 used a short QPL of 11 questions and

patients asked approximately half this number, some

years later Brown et al.11 found an average of 15

questions were asked and the QPL contained 17

questions. Bruera et al.23 used a QPL containing 22

questions and patients asked 10 questions. However,

in Clayton et al.,22 despite containing 112 questions,

only an average of 15 questions were asked by

patients who received extensive endorsement from

their physician. This is a predictable effect, as not all

questions will be directly relevant to patients at any

given time. Furthermore, other factors such as the

amount of information the physician provides,

endorsement of QPL use, and time constraints will

also affect question-asking. While we encourage

patients to use a comprehensive, evidence-based

QPL containing questions that may be variably rele-

vant to patients at different stages of cancer, a

shorter ‘impact’ QPL may also be useful to recently

diagnosed patients overwhelmed by information, and

should be the focus of future developments. A short

QPL containing the most relevant questions cancer

patients require prompting to ask to satisfy their infor-

mational needs may improve participation by helping to

focus patient attention on pertinent questions.

A concerning finding was the lack of research

examining the use of a QPL by non-English-speaking

cancer patients. To our knowledge, there are no can-

cer-specific QPLs that have been translated to other

languages, meaning a large contingent of patients

misses out on the benefits. Any researchers attempt-

ing to translate existing QPLs for specific national-

ities should also be mindful of the requirement to

ensure questions are culturally sensitive, as large var-

iations are consistently reported between cultures in

attitudes toward cancer, participation in decision-

making, and in discussing illness.41 Another gap in

the research involves longitudinal studies. While

most studies performed follow-up examinations to

determine the effects of the QPL on patient psycho-

TABLE 4Directions for Future Question Prompt List (QPL) Research

� Determine the most effective number and type of questions that should be

included and what is the best form (eg, pamphlet, book, help card).

� Develop culturally-sensitive QPLs for non-English-speaking cancer patients.

� Further develop computer-generated, individualized question lists.

� QPL for family and caregivers.

� Further explore views of physicians and other health professionals.

� Longitudinal research examining repeated use of the QPL and use of the QPL by

patients at later stages of their disease.

� Examine use and acceptance of the QPL in real world and identify barriers to

implementation.


logical outcomes during the weeks following their

first consultation, no studies examined the use of the

QPL at later stages of illness or repeated use of the

QPL. Studies show that patient information needs

change dramatically during the progression of their

illness4; therefore, future research should examine

what kind of questions the QPL will prompt patients

to ask at later stages of care or whether views on the

QPL’s utility evolve.

Few studies reported the views of doctors and

other health professionals of the QPL. Effective

implementation of a tool requires acceptance by

staff, as well as patients, as they will typically be re-

sponsible for disseminating the tool to patients and

encouraging them to use it. Of the few studies that

examined physician views, the response overall was

positive. Furthermore, as an important part of a

patient’s life and their care is their caregiver, further

research is required to examine the utility of a QPL

for use by these parties. One study reviewed provided

a section in the QPL solely for caregivers and this

proved to be effective.22

Some have argued that giving patients a checklist

of questions constitutes a paternalistic approach and

inhibits patients from putting forward their own agen-

das. Instead, it has been suggested that patients should

write their own list of questions. However, past studies

have found that patients from lower socioeconomic

areas are less likely to write a list of questions42 and,

when they do, they rarely touch on psychosocial

issues.43 Furthermore, Wells et al.43 identified that ques-

tions are often poorly articulated by patients. Therefore,

providing a structured, evidence-based list of questions

may be more beneficial, with additional blank space

provided if patients wish to add any other questions.

Davison and Degner25,28 attempted a progressive

improvement of the QPL by using a computer program

to collate and synthesize the informational needs of

individual women with breast cancer, outputting a per-

sonal list of ‘prompt’ categories that patients could use

to help them ask questions. While they failed to find

any improvements in patient participation in the con-

sultation, there may be utility in an individualized

approach to developing questions, rather than using

group-level evidence. The efficiency of using a com-

puter program to generate questions in this way should

be recognized and further developed in the future.

We acknowledge the limitations of this review,

including the small number of studies that met our

strict criteria. Most studies occurred in the last dec-

ade and almost half the studies identified were from

our own research group. However, the increasing use

of QPLs by researchers and health professionals with

cancer patients both in research settings and routine

care calls for a review of the findings to date. Of note

also is that the patients in the review were generally

older than 50 years old, had completed secondary

school, and were mostly at early stages of their dis-

ease. These characteristics may be associated with

particular informational needs and should be consid-

ered when examining the reported findings.

RecommendationsEvidence-based QPLs that have been developed from

focus groups and interviews with cancer patients and

specialists are already available for use. Although the

QPL can be given to patients at any stage of illness,

ideally patients should receive it when they are first

diagnosed so that they can continue to use this and

other versions throughout various stages of care. We

recommend the QPL be disseminated before a

patient’s appointment to give them enough time to

read and consider the questions. Table 5 presents an

evidence-based QPL that may be used with patients

seeing a medical or radiation oncologist. This and

other QPLs for cancer patients at different stages of

care, including questions for cancer patients seeing a

surgeon or a palliative-care team, are available in pdf

format for free download from the following website:

http://www.psych.usyd.edu.au/mpru/communication_

tools.html. It should, however, be noted that the pro-

vided QPLs are only written in English and may not

be sensitive to some cultures’ views of cancer.

For enhanced patient benefits, it is important

that physicians help patients feel comfortable in the

consultation to ask questions. We suggest physicians

use the following standard endorsement statement

developed by Clayton et al.23:

‘‘We think it is very important that you feel that

you have all the information that you want: asking

questions is a good way of ensuring that we cover

everything that is important to you. Many people tell

me that they get home and realize that they forgot to

ask an important question. So I want you to feel free

to ask anything you want, even if you feel that it is a

silly or embarrassing question. So why don’t we go

through any questions that you have written down or

circled on the brochure.’’

Together, the findings of the review suggest that

the QPL is a useful tool that helps patients to shift the

focus of the consultation and obtain answers to the

information they seek by asking specific questions. It

is simple to use, inexpensive to produce, and may

help mitigate the rising cost of cancer care by arming

patients with a means of better informing themselves

of more convenient treatments. To ensure widespread

adoption of the QPL as a fixed element of routine can-

cer care, the next step is to determine the most effec-


TABLE

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explainan

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Wha

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tive method of disseminating the tool to patients.44

Implementation research should identify barriers to

successful uptake within particular localities and test

different dissemination methods for optimal uptake.

This will provide an indication of the feasibility and

acceptability of QPLs in routine cancer care.

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can a “prompt list” empower cancer patients to ask relevant questions?

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