Communicating treatment risks and˜bene˚ts to˜cancer patien ......First:RRR,ARR,ASB,NNT...

Vol.:(0123456789)1 3

Quality of Life Research (2020) 29:1747–1766 https://doi.org/10.1007/s11136-020-02503-8

REVIEW

Communicating treatment risks and benefits to cancer patients: a systematic review of communication methods

L. F. van de Water1,2 · J. J. van Kleef1,2 · W. P. M. Dijksterhuis1 · I. Henselmans2 · H. G. van den Boorn1 · N. M. Vaarzon Morel1 · K. F. Schut1 · J. G. Daams3 · E. M. A. Smets2 · H. W. M. van Laarhoven1

Accepted: 8 April 2020 / Published online: 24 April 2020 © The Author(s) 2020

AbstractPurpose Cancer patients are increasingly involved in decision-making processes. Hence, clinicians need to inform patients about the risks and benefits of different treatment options in order for patients to make well informed decisions. The aim of this review is to determine the effects of methods of communicating prognostic information about (1) disease progression (survival, progression, recurrence and remission), (2) side effects and complications and (3) health-related quality of life (HRQL) on cognitive, affective and behavioral outcomes in cancer patients.Methods A literature search was performed to select articles that were published up to November 2019 and that examined verbal and/or visual risk communication interventions in an oncological clinical setting.Results The search yielded 14,875 studies; 28 studies were ultimately included. For disease progression information, we found that framing affects treatment choice. Furthermore, limiting the amount of progression information in a graphical display could benefit patients’ understanding of risks and benefits. For prognostic information about side effects and compli-cations, precise and defined risk information was better understood than information presented in words. When displaying HRQL data, no consensus was found on which graph type to use.Conclusion Great heterogeneity in the results and methodology and in the compared communication formats precluded us from drawing any further conclusions. Practical implications for clinicians are to consider the effects that different types of framing might have on the patient and to not rely exclusively on words to describe risks, but rather include at least some form of numbers or visualization.

Keywords Risk communication · Health-related quality of life · Side effects · Survival · Cancer

Introduction

In daily clinical practice, many decision making situations occur in which there is no ‘single best treatment option’, since either the medical scientific evidence on the ben-efit–harm ratio of the options is insufficient, or the ratio is dependent on patients’ values [1]. There is increasing con-sensus that in these situations, the patient and clinician need to work together and determine what is best for the patient, a process called shared decision-making (SDM) [2, 3].

The clinician however remains responsible for the trans-fer of probabilistic information to the patient, which is an important step in shared decision-making. If there are mul-tiple treatment options, patients should receive information about disease progression or survival, the risk of side effects and complications, and the impact on health-related qual-ity of life (HRQL) for each option. It is of importance that

This research was presented as a poster at the ARPH conference 2019, and the ISOQOL annual meeting 2018 (awarded with the Student Poster Award 2018).

Electronic supplementary material The online version of this article (https ://doi.org/10.1007/s1113 6-020-02503 -8) contains supplementary material, which is available to authorized users.

* H. W. M. van Laarhoven [email protected]

1 Department of Medical Oncology, Amsterdam University Medical Centers, Cancer Center Amsterdam, University of Amsterdam, P.O. Box 22700, 1100 DE Amsterdam, The Netherlands

2 Department of Medical Psychology, Amsterdam University Medical Centers, Amsterdam Public Health, University of Amsterdam, Amsterdam, The Netherlands

3 Amsterdam University Medical Centers, Medical Library, University of Amsterdam, Amsterdam, The Netherlands

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1748 Quality of Life Research (2020) 29:1747–1766

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patients understand the risks and benefits [4], only then can the decision-making process result in the best choice for this particular patient.

However, research shows that correct understanding of relevant outcome information is by no means always achieved in cancer care. For example, studies have shown that breast cancer patients do not fully understand probabil-istic information as presented by the clinician [5, 6]. In the case of rectal cancer, only a few patients were found to be able to correctly estimate probabilistic information on treat-ment outcomes [7]. Clinicians can use different methods to communicate risks, for example, by using words or numbers, by using different types of graphic displays, or by framing the information negatively or positively (in terms of survival or mortality). Based on the review by Zipkin, et al., recom-mendations are available for risk communication in health care, such as avoiding the exclusive use of qualitative risk descriptors (such as ‘many’, or ‘high’), supplementing bar charts or icon arrays to numerical risks, and recognizing that framing and the use of relative risk reductions (RRRs) (see Table 1) influences decision making [8]. However, to date, we do not know to what extent these recommendations apply to the specific context of making decisions about can-cer treatment. These are difficult decisions because of the complexity of most treatments. Moreover, the life-threaten-ing nature of the disease induces many emotions [9], which might affect information processing and thus the decision-making process [10]. Furthermore, we do not know how these recommendations might differ for different types of probabilistic information: disease progression, side effects and complication or HRQL [8].

The aim of this systematic review is to evaluate the evidence on the effect of different ways of communicat-ing treatment-related disease progression, side effects and complications and HRQL risk information to cancer patients who have to decide about treatment. Therefore, the effects of different communication methods will be evaluated on three levels: cognitive outcomes (such as patients’ understand-ing), affective outcomes (such as preference for communi-cation method) and behavioral outcomes (such as treatment choice).

Methods

Search method

A literature search was conducted on the 28th of March 2018 in PubMed, Medline, Embase, PsycINFO and Web of Science. A search update was performed on the 14th of November 2019. Scanning the references of the articles that were initially retained, using citation analysis, helped us to create a set of potentially relevant publications. From this

reference set, key concepts for the systematic search were identified. All references from this search had to be retrieved by the final systematic search. Keywords related to the con-cepts of (surrogate) patients, communication methods (such as graphical, numerical and verbal information), outcomes (such as preference and understanding) and study designs (such as randomized controlled trial and observational stud-ies) were used to search the databases. A broad search strat-egy was applied (see Online Resource 1). Duplicates were removed and articles were screened on eligibility based on title and abstract using Rayyan [11] by six reviewers inde-pendently. Each article was screened in duplicate by two reviewers. The search in March 2018 was screened by three reviewer pairs (JJvK and LvdW, JJvK and IH, NVM and KS) and the search update in November 2019 was screened by LvdW and WD. The same reviewer pairs were used for title and abstract screening and for screening of the full-text articles.

Inclusion and exclusion criteria

All studies published in English up to November 14, 2019 with the following characteristics were included:

Population and context

Studies in which the participants (≥ 18 years) were diag-nosed with cancer were included, as were studies that involved healthy surrogate cancer patients (≥ 18 years), i.e., healthy participants answering as if they had cancer. Only studies focusing on risk communication regarding treatment decisions were included; studies on risk communication in cancer screening programs were excluded.

Study design

Randomized and nonrandomized controlled trials and cross-sectional and longitudinal observational studies were included. Qualitative/mixed method studies were only included if (1) quantitative data could be extracted in relation to an outcome and (2) a risk communication inter-vention was offered. Between- and within-subjects stud-ies were included. Case–control and case-series studies were excluded, as were reports, book chapters, conference abstracts and theses.

Interventions

Any method of communicating probabilistic information was included. If different communication methods were compared, the same data needed to have been presented in the compared formats. When studies used decision aids as part of an intervention, the (manipulated) characteristics

1749Quality of Life Research (2020) 29:1747–1766

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Table 1 Examples of verbal and visual methods of communication

Method of communication Example

Verbal communication Positive framing …65 out of 100 patients are alive at 1 year… Negative framing …35 out of 100 patients die in 1 year time…

Mixed framing …65 out of 100 patients are alive at 1 year, 35 out of 100 patients die in 1 year time … Frequency …80 out of 100 patients… Percentage …80% of patients… Words …there is a high risk of… Absolute risk reduction (ARR) … the risk of death can be lowered by 3%, from 15 to 12% … (ARR = Event rate 1—Event rate 2) Relative risk reduction (RRR) …the risk of death can be lowered by 20%… (RRR = ARR/Event rate 1) Number needed to treat (NNT) …if 33 patients would be treated, 1 would survive because of the treatment… (NNT = 1/ARR) Absolute survival benefit (ASB) …the chance of survival can be increased by 5%, from 76 to 81%…

Visual communication Line graph

Bar chart

Pictograph


1 3

of the risk communication format needed to have been described in a detailed manner.

Outcomes

Cognitive outcomes (e.g., patients’ understanding), affec-tive outcomes (e.g., patients’ preference for the format) and behavioral outcomes (e.g., patients’ treatment choice) were included.

Data extraction

Data regarding study characteristics and outcomes were extracted by LvdW, using an extraction sheet. Outcomes were classified according to Zipkin et al. using the categories of cognitive, affective and behavioral outcomes [8].

Quality assessment

For the randomized, between-subjects trials, methodological quality was assessed with a combination of the criteria for-mulated by the adapted Cochrane Collaboration Consumer and Communication review group [12] and items from the Cochrane Collaboration Tool for Assessing Risk of Bias (Online Resource 2). The scale involves nine items, which were rated as either ‘not fulfilled’ (0), ‘fulfilled’ (1) or ‘not specified’ (0). Studies with positive scores on more than half of the items (> 4.5) were considered as ‘high quality’. Cross-sectional studies using a within-subjects comparison on the outcomes of interest were rated with an adapted version of the Newcastle–Ottawa Scale for Evaluating Cross-sectional/Survey Studies (Online Resource 3). This scale involves nine items, scored with a maximum of two points per item. Stud-ies with scores > 75% of total attainable points were consid-ered ‘high quality’, scores > 50% as ‘moderate quality’ and 50% or less as ‘low quality’ [13]. For qualitative studies, the Critical Appraisal Skills Programme (CASP) Qualitative Checklist [14] was used to assess methodological quality,

which consists of ten items scored with a maximum of 20 points in total [15]. The same cut-off scores as for cross-sectional studies were applied [13]. Quality assessment was performed by LvdW who, in case of uncertainty, discussed with a second reviewer (JJvK) until agreement was reached. To ensure a comprehensive review of the literature, assessed methodological quality was not set as an exclusion criterion.

Data analysis

Studies were subdivided according to the type of type of prognostic information: disease progression, side effects and complications or HRQL. Information on disease pro-gression includes information about survival, progression, remission and recurrence. Verbal and visual communication methods were defined, as shown in Table 1. Analysis was performed separately per type of prognostic information. For each information type, studies investigating the same com-munication methods were compared according to outcomes (cognitive, affective and behavioral).

Results

The search in PubMed, MEDLINE, PsychINFO, Embase and Web of Science yielded 20,102 articles; removing dupli-cates resulted in a total of 14,875 articles for screening. Of these, 181 were screened full text, and 28 were included. A summary of the search results can be found in Fig. 1.

Cognitive outcomes were categorized into interpretation accuracy, subjective understanding (including confusion) and cognitive effort. Affective outcomes were categorized into preference for format, satisfaction with format and per-ceived usefulness (including helpfulness for decision mak-ing). All behavioral outcomes (including endorsement of treatment and treatment preference or intentions) were cat-egorized as treatment choice. We found that this outcome

Table 1 (continued)

Method of communication Example

Pie chart


1 3

was only assessed in studies with disease progression or side effects and complications information.

Seventeen studies investigated probabilistic informa-tion regarding disease progression, of which eleven stud-ies included cognitive outcomes (interpretation accuracy, subjective understanding and cognitive effort) [5, 16–25], ten studies included affective outcomes (preference and per-ceived usefulness) [5, 16, 18, 20, 22, 24–28] and seven stud-ies included behavioral outcomes (treatment choice) [17, 21, 23, 24, 29–31]. One study was not included in the behavioral outcome analysis, because it lacked a control group [26]. Of the seventeen studies on disease progression information, fourteen studies investigated information on survival, two studies on recurrence, one study on progression and one study on remission.

Seven studies investigated probabilistic information regarding side effects or complications, of which four studies included cognitive outcomes (interpretation accuracy) [28, 32–34], six studies included affective outcomes (preference and satisfaction) [28, 32–36] and one study included the behavioral outcome treatment choice [37].

Five studies investigated probabilistic information regard-ing HRQL, of which four studies included cognitive out-comes (interpretation accuracy and subjective understand-ing) [38–41] and four studies included affective outcomes (preference and perceived usefulness) [38, 39, 41, 42].

Eleven studies included (cancer) patients [5, 18–22, 26, 28, 36, 38, 42], eight studies included healthy volunteers [16, 17, 23–25, 27, 31, 37] and nine studies included both

cancer patients and either healthy volunteers or health-care professionals or all of these [29, 30, 32–35, 39–41].

Methodological quality

For randomized, between-subjects studies, methodologi-cal quality was rated high for seven studies [16, 23, 25, 32, 34, 35, 37] and low for seven studies [17, 21, 24, 27, 30, 33, 40]. Specific scores can be found in Online Resource 4. Items that were often not sufficiently described encompassed whether the method of randomization was truly random, whether allocation was concealed, whether the data analyst was blinded and whether all prespecified outcomes were reported. Only four out of fourteen studies used validated outcome measures to assess one of the outcomes.

For nonrandomized within-subjects cross-sectional stud-ies, methodological quality was rated high for none of the studies, moderate for nine studies [19, 20, 22, 26, 36, 38, 39, 41, 42] and low for four studies [5, 28, 29, 31]. Statistical testing and nonresponse were often reported in insufficient detail. The representativeness and size of the sample were often not satisfactory. All studies used self-report measures, and only two out of eleven studies used validated measures to assess one of the outcomes.

Methodological quality was moderate for the one qualita-tive study that was included [18].

Because each study assessed and compared another set of communication methods, effects were only described in text if communication methods were compared in more than one study. An overview of the studies’ compared methods and results can be found in Tables 2, 3 and 4.

Probabilistic information on disease progression

Table 2 provides a summary of the results regarding the communication of information about disease progression. Eleven of these studies investigated the effect of different formats on cognitive outcomes. Based on three studies, of which two were of high methodological quality and one of low, graphs were better understood (interpretation accuracy and cognitive effort) when there was less information for the participant to process at one time (in one graph or in differ-ent graphs presented at once), compared to more information [23–25]. One study of low quality supported this conclusion for verbal formats, by showing higher confusion rates when different formats were presented all at once, compared to separate presentation [17]. Contradictory results were found when verbal information was compared to graphical infor-mation; two studies found higher subjective understanding for words compared to graphs (moderate quality) [20] or compared to graphs accompanied by words (low quality) [21]. However, one study of moderate quality found that

Fig. 1 Flow chart of the study inclusion process


1 3

graphs were objectively better understood than words [19]. No further conclusions could be drawn on cognitive out-comes because of heterogeneity in the compared commu-nication formats.

Ten studies included affective outcomes, of which nine investigated a preference for formats and two investigated the perceived usefulness of the formats. Although there was much variation in compared formats, two studies, both of high methodological quality, did compare pictographs (among other formats) with bar charts [16, 25]. However, these two studies found conflicting results: one found bar charts to be preferred over pictographs [16] and the other found pictographs to be preferred over bar charts [25]. Two studies of low and moderate quality found positive framing to be preferred over negative framing, although none per-formed statistical analysis on this effect [5, 18]. When com-paring words to numbers, three studies, of low and moderate quality, found conflicting results, of which none performed statistical analysis on this comparison [5, 26, 28].

Seven studies investigated the behavioral outcome treat-ment choice. Different treatment options were presented in these studies, ranging from very specific (radiotherapy) to more general descriptions of treatment (an unknown treat-ment that is more toxic but also has higher survival rates). In all but one study there were only two possible options [23]. Three studies investigated the differences in treatment choice when information was framed positively (in terms of survival), negatively (in terms of death) or both (mixed frame) [29–31]. Two of these, both of low methodologi-cal quality, found that surgery (higher chance of survival, but risk of perioperative death) was more frequently chosen (instead of radiotherapy—lower chance of survival and more side effects) when information was framed positively instead of negatively [29, 31]. When patients in another low-qual-ity study had to choose between a treatment that was more effective, but more toxic, and one that was less effective and less toxic, the first was less preferred in a negative frame (compared to positive and mixed) [30].

Probabilistic information on side effects and complications

Table 3 provides a summary of the results regarding infor-mation about side effects and complications. Seven stud-ies investigated the effects of communication methods on side effects and complications information [28, 32–37], of which four investigated the cognitive outcome interpretation accuracy, six the affective outcomes preference or satisfac-tion and one the behavioral outcome treatment choice. Two studies of high methodological quality compared accuracies for risk information in words to percentages and/or frequen-cies. These studies found that more precise risk information about side effects (percentage/frequency) was superior to

information in words [32, 34]. When comparing frequen-cies to percentages, no clear effect was found. One study of low quality only found a difference on one of six check questions, showing higher accuracies for percentages [33].

Concerning satisfaction with and preferences for commu-nication methods, most studies did not find a significant dif-ference between formats. However, one study of high quality found that communicating frequencies instead of (solely) verbal risk information can contribute significantly to patient satisfaction [34]. Two other studies of low and moderate quality found a description in both words and numbers and a (detailed) description in words only to be most preferred [28, 36]. These two studies did however not report statistical analysis on these preferences.

Probabilistic information on health‑related quality of life

Table 4 provides a summary of the results regarding HRQL information. Four studies compared different methods of communicating HRQL information on cognitive outcomes three looked at interpretation accuracy and four looked at subjective understanding. One study of moderate meth-odological quality found that basic line graphs were best understood (objectively and subjectively; compared to tex-tual descriptions, line graphs with ranges and several differ-ent bar chart formats) [38]. Another moderate-quality study found simple line graphs to score highest on ease of under-standing, but did not report any statistical testing on this out-come [39]. With respect to the directionality of line graphs, a study of low quality found lines going up meaning better outcomes, to be interpreted more accurately than lines going up meaning more of the outcome or normed lines [40]. A third study of moderate quality, however, found pie charts to be best understood (objectively and subjectively, compared to bar charts and icon arrays), but did not report statistical testing on this outcome for patients separately [41].

Affective outcomes for HRQL data were compared in four studies. Three studies measured perceived usefulness and one study measured preference for communication method. Three studies found that simple line graphs dis-playing mean scores were perceived as most useful [38, 39, 42], of which only one study, of moderate quality, reported a significant difference between formats: line graphs display-ing mean scores were perceived as most helpful (compared to line graphs with ranges, textual descriptions and various bar chart formats) [38]. Another study, however, reported pie charts to be most positively commented on, compared to bar charts and icon arrays [41].


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erat

e


1 3

Tabl

e 2

(con

tinue

d)

Stud

yIn

form

atio

nO

utco

me

Des

ign

Com

pare

d m

etho

dsFi

ndin

gs o

f int

eres

tM

eth-

odol

ogic

al

qual

ity

Lob

b 19

99b

#5Re

curr

ence

Inte

rpre

tatio

n ac

cura

cyO

bser

vatio

nal c

ross

-sec

tiona

l, w

ithin

-sub

ject

sA

bsol

ute

risk

of re

laps

e, R

RR

, m

edia

n 5-

year

surv

ival

, gra

ph-

ical

pre

sent

atio

n, p

erce

ntag

es

vs. f

requ

enci

es, n

umer

ical

vs

. ver

bal d

escr

iptio

ns o

f ris

k, p

ositi

vely

vs.

nega

tivel

y fr

amed

stat

emen

ts

Of p

artic

ipan

ts, 7

3% in

terp

rete

d th

e m

edia

n co

rrec

tly. 8

0%

of p

artic

ipan

ts in

terp

rete

d th

e gr

aphi

cal p

rese

ntat

ion

corr

ectly

. 47%

cou

ld c

alcu

late

th

e R

RR

cor

rect

ly b

ased

on

the

AR

R a

nd 8

6% in

terp

rete

d th

e ab

solu

te ri

sk o

f rel

apse

co

rrec

tly. N

o co

nsist

ency

was

fo

und

in in

terp

reta

tions

of

verb

ally

and

num

eric

ally

com

-m

unic

ated

risk

s.

Low

Zik

mun

d 20

08a

#25

Surv

ival

Inte

rpre

tatio

n ac

cura

cy +

cogn

i-tiv

e eff

ort

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

4-op

tion

pict

ogra

ph, 4

-opt

ion

horiz

onta

l bar

cha

rt, 2

-opt

ion

pict

ogra

ph, 2

-opt

ion

horiz

onta

l ba

r cha

rt

Parti

cipa

nts w

ho v

iew

ed th

e 2-

optio

n pi

ctog

raph

or t

he

2-op

tion

bar c

hart

vers

ion

wer

e si

gnifi

cant

ly m

ore

accu

rate

on

a ris

k re

duct

ion

ques

tion

than

par

ticip

ants

w

ho v

iew

ed th

e 4-

optio

n pi

ctog

raph

or t

he 4

-opt

ion

bar

char

t.Pa

rtici

pant

s ans

wer

ed m

ore

quic

kly

(cog

nitiv

e eff

ort)

whe

n pr

esen

ted

with

a

2-op

tion

grap

h th

an w

hen

pres

ente

d w

ith a

4-o

ptio

n gr

aph.

4-o

ptio

n pi

ctog

raph

s or

4-o

ptio

n ba

r cha

rts d

id n

ot

diffe

r sig

nific

antly

in ti

me

need

ed.

Hig

h

Zik

mun

d 20

10a

#24

Surv

ival

Inte

rpre

tatio

n ac

cura

cy +

cogn

i-tiv

e eff

ort

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

Mul

ti-ou

tcom

e pi

ctog

raph

(sur

-vi

val a

nd m

orta

lity +

caus

e),

surv

ival

-onl

y pi

ctog

raph

(bot

h pi

ctog

raph

s sho

wed

2 tr

eat-

men

t opt

ions

)

Parti

cipa

nts w

ho v

iew

ed

surv

ival

-onl

y pi

ctog

raph

s w

ere

sign

ifica

ntly

mor

e ac

cura

te w

hen

repo

rting

the

tota

l cha

nce

of su

rviv

al w

ith

both

com

bine

d an

d ho

rmon

al

ther

apy,

but

not

whe

n re

port-

ing

the

incr

emen

tal c

hanc

e of

su

rviv

al. C

ogni

tive

effor

t did

no

t diff

er si

gnifi

cant

ly b

etw

een

the

two

cond

ition

s.

Low


1 3

Tabl

e 2

(con

tinue

d)

Stud

yIn

form

atio

nO

utco

me

Des

ign

Com

pare

d m

etho

dsFi

ndin

gs o

f int

eres

tM

eth-

odol

ogic

al

qual

ity

Zik

mun

d 20

11a

#23

Surv

ival

Inte

rpre

tatio

n ac

cura

cyR

ando

miz

ed c

ross

-sec

tiona

l, be

twee

n-su

bjec

ts1 ×

4 pi

ctog

raph

s at o

nce,

2 ×

2 pi

ctog

raph

s seq

uent

ially

Parti

cipa

nts i

n th

e se

quen

tial

cond

ition

wer

e si

gnifi

cant

ly

mor

e ac

cura

te th

an th

ose

in

the

‘all

at o

nce’

con

ditio

n.

Hig

h

Affe

ctiv

e ou

tcom

es C

arey

201

8b#2

8Su

rviv

al +

rem

issi

onPr

efer

ence

Obs

erva

tiona

l cro

ss-s

ectio

nal,

with

in-s

ubje

cts

Wor

ds, n

umbe

rs, b

oth

wor

ds a

nd

num

bers

Rem

issi

on: m

ost p

atie

nts p

re-

ferr

ed b

oth

wor

ds a

nd n

umbe

rs

(42%

) ove

r onl

y w

ords

(30%

) or

onl

y nu

mbe

rs (1

0%).

16%

ha

d no

pre

fere

nce;

05%

gav

e no

info

rmat

ion;

(5 y

ear)

sur-

viva

l: m

ost p

atie

nts p

refe

rred

bo

th w

ords

and

num

bers

(4

3%) o

ver o

nly

wor

ds (2

8%),

or o

nly

num

bers

(8%

). 15

%

had

no p

refe

renc

e; 3

% d

id n

ot

wan

t any

info

rmat

ion.

Low

Dav

ey 2

003b

#18

Surv

ival

Pref

eren

ceQ

ualit

ativ

eFr

amin

g: p

ositi

ve, n

egat

ive,

m

ixed

Pre

sent

atio

n: 1

00 fa

ces

pict

ogra

ph, n

umbe

rs a

nd

perc

enta

ges,

text

onl

y, g

raph

St

age:

one

stag

e al

one,

thre

e st

ages

toge

ther

25 o

ut o

f 26

parti

cipa

nts p

re-

ferr

ed p

ositi

ve fr

amin

g an

d 1

parti

cipa

nt p

refe

rred

mix

ed

fram

ing.

9 o

ut o

f 26

parti

ci-

pant

s pre

ferr

ed in

form

atio

n on

al

l thr

ee st

ages

, 6 p

refe

rred

to

rece

ive

info

rmat

ion

only

for

thei

r sta

ge.

Mod

erat

e

Hag

erty

200

4b#2

0Su

rviv

alPr

efer

ence

Obs

erva

tiona

l cro

ss-s

ectio

nal,

with

in-s

ubje

cts

Wor

ds, p

erce

ntag

e, fr

actio

n,

pict

ogra

ph, p

ie c

hart,

surv

ival

(li

ne) g

raph

Parti

cipa

nts p

refe

rred

wor

ds a

nd

num

bers

ove

r vis

ual p

rese

nta-

tions

such

as p

ie c

harts

or

grap

hs.

Mod

erat

e

Ham

stra

2015

a

#16

Recu

rren

cePr

efer

ence

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

Pict

ogra

ph w

ith n

o nu

mbe

rs

labe

led

in th

e gr

aph,

line

gr

aph,

pie

cha

rt, p

icto

grap

h an

d ba

r cha

rt w

ith o

nly

the

num

ber o

f affe

cted

indi

vidu

als

labe

led,

pie

cha

rt, p

icto

grap

h,

bar c

hart

with

bot

h th

e nu

mbe

r of

affe

cted

and

the

num

ber o

f un

affec

ted

indi

vidu

als l

abel

ed

Sign

ifica

ntly

less

par

ticip

ants

w

ould

pre

fer p

roba

bilis

tic

info

rmat

ion

in a

pic

togr

aph,

ra

ther

than

in a

bar

cha

rt, p

ie

grap

h or

line

gra

ph.

Hig

h


1 3

Tabl

e 2

(con

tinue

d)

Stud

yIn

form

atio

nO

utco

me

Des

ign

Com

pare

d m

etho

dsFi

ndin

gs o

f int

eres

tM

eth-

odol

ogic

al

qual

ity

Kie

ly 2

013a

#22

Surv

ival

Pref

eren

ce +

perc

eive

d us

eful

ness

Obs

erva

tiona

l cro

ss-s

ectio

nal,

with

in-s

ubje

cts

3 ris

k sc

enar

ios (

in a

bar

plo

t)—be

st ca

se, m

ost l

ikel

y, w

orst

case

—on

ly m

edia

n su

rviv

al (i

n w

ords

)

48%

of p

artic

ipan

ts p

refe

rred

to

rece

ive

both

thre

e sc

enar

ios

and

med

ian

surv

ival

, 40%

pr

efer

red

thre

e sc

enar

ios o

nly

and

5% p

refe

rred

med

ian

only

. Pa

rtici

pant

s fou

nd th

e th

ree

scen

ario

s sig

nific

antly

mor

e he

lpfu

l tha

n m

edia

n su

rviv

al.

Mod

erat

e

Lob

b 19

99b

#5Re

curr

ence

Pref

eren

ceO

bser

vatio

nal c

ross

-sec

tiona

l, w

ithin

-sub

ject

sA

bsol

ute

risk

of re

laps

e, R

RR

, m

edia

n 5-

year

surv

ival

, gra

ph-

ical

pre

sent

atio

n, p

erce

ntag

es

vs. f

requ

enci

es, n

umer

ical

vs

. ver

bal d

escr

iptio

ns o

f ris

k, p

ositi

vely

vs.

nega

tivel

y fr

amed

stat

emen

ts

43%

of p

artic

ipan

ts p

refe

rred

po

sitiv

ely

fram

ed ri

sks

(eg,

‘cha

nce

of c

ure’

), 33

%

pref

erre

d ne

gativ

ely

fram

ed

mes

sage

s (eg

, ‘ch

ance

of

rela

pse’

) and

25%

had

no

pref

eren

ce. W

hen

com

parin

g fr

eque

ncie

s to

perc

enta

ges,

44%

of r

espo

nden

ts p

refe

rred

a

perc

enta

ge, 1

3% p

refe

rred

a

freq

uenc

y, a

nd th

e re

mai

n-de

r had

no

pref

eren

ce. W

hen

com

parin

g nu

mer

ical

to v

erba

l ris

ks, 5

3% o

f par

ticip

ants

pre

-fe

rred

a n

umer

ical

des

crip

tion

(per

cent

age)

, 38%

pre

ferr

ed

a ve

rbal

des

crip

tion

and

the

rem

aind

er h

ad n

o pr

efer

ence

.

Low

Maz

ur 1

999b

,c

#26

Surv

ival

Pref

eren

ceO

bser

vatio

nal c

ross

-sec

tiona

l, w

ithin

-sub

ject

sW

ords

onl

y, n

umbe

rs o

nly

Of p

artic

ipan

ts h

avin

g a

pref

er-

ence

for e

ither

num

bers

or

wor

ds, 4

4% h

ad a

pre

fere

nce

for w

ords

onl

y an

d 56

% fo

r nu

mbe

rs o

nly.

Mod

erat

e

Stu

dts 2

005a

#27

Surv

ival

Perc

eive

d us

eful

ness

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

RR

R, A

RR

, ASB

, NN

TPa

rtici

pant

s rat

ed th

e A

SB si

g-ni

fican

tly m

ore

ofte

n as

mos

t he

lpfu

l and

mos

t infl

uent

ial

than

the

othe

r thr

ee m

etho

ds

(AR

R, R

RR

and

NN

T).

Low

Zik

mun

d 20

08a

#25

Surv

ival

Pref

eren

ceR

ando

miz

ed c

ross

-sec

tiona

l, be

twee

n-su

bjec

ts4-

optio

n pi

ctog

raph

, 4-o

ptio

n ho

rizon

tal b

ar c

hart,

2-o

ptio

n pi

ctog

raph

, 2-o

ptio

n ho

rizon

tal

bar c

hart

The

4-op

tion

and

the

2-op

tion

pict

ogra

phs r

ecei

ved

sign

ifi-

cant

ly h

ighe

r pre

fere

nce

scor

es

than

the

4-op

tion

bar c

hart.

Hig

h


1 3

Tabl

e 2

(con

tinue

d)

Stud

yIn

form

atio

nO

utco

me

Des

ign

Com

pare

d m

etho

dsFi

ndin

gs o

f int

eres

tM

eth-

odol

ogic

al

qual

ity

Zik

mun

d 20

10a

#24

Surv

ival

Pref

eren

ceR

ando

miz

ed c

ross

-sec

tiona

l, be

twee

n-su

bjec

tsM

ulti-

outc

ome

pict

ogra

ph (s

ur-

viva

l and

mor

talit

y + ca

use)

, su

rviv

al-o

nly

pict

ogra

ph (b

oth

pict

ogra

phs s

how

ed 2

trea

t-m

ent o

ptio

ns)

Surv

ival

-onl

y pi

ctog

raph

s wer

e ra

ted

sign

ifica

ntly

bet

ter t

han

mul

ti-ou

tcom

e pi

ctog

raph

s.

Low

Beh

avio

ral o

utco

mes

Cha

o 20

03a

#17

Surv

ival

Trea

tmen

t cho

ice:

Adju

vant

che

mot

hera

py v

s. N

o ad

juva

nt c

hem

othe

rapy

(in

add

ition

to su

rger

y an

d ta

mox

ifen)

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

Firs

t: R

RR

, AR

R, A

SB, N

NT

Then

: all

form

ats t

oget

her

(RR

R +

AR

R +

ASB

+ N

NT)

Parti

cipa

nts w

ho re

ceiv

ed a

R

RR

wer

e si

gnifi

cant

ly m

ore

likel

y to

end

orse

adj

u-va

nt c

hem

othe

rapy

. Whe

n pa

rtici

pant

s rec

eive

d al

l fou

r m

etho

ds o

f com

mun

icat

ing

surv

ival

ben

efits

of c

hem

othe

r-ap

y, th

ere

wer

e no

sign

ifica

nt

treat

men

t dec

isio

n di

ffere

nces

. D

ecis

ion

confi

denc

e di

d al

so

not d

iffer

sign

ifica

ntly

bet

wee

n co

nditi

ons.

Low

Kan

g 20

18a,

c,d

#21

Prog

ress

ion

Trea

tmen

t cho

ice:

Surg

ical

con

sulta

tion

vs. S

ur-

veill

ance

usi

ng C

T

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

Wor

ds, w

ords

+ pi

ctog

raph

Whe

n nu

mer

ic a

nd g

raph

ical

in

form

atio

n (p

icto

grap

h) w

as

adde

d to

des

crip

tive

info

rma-

tion

(wor

ds) a

bout

a 2

-cm

re

nal t

umor

, par

ticip

ants

fa

vore

d su

rgic

al c

onsu

ltatio

n si

gnifi

cant

ly le

ss o

ften

com

-pa

red

to w

hen

risk

info

rmat

ion

was

pro

vide

d us

ing

wor

ds

only

. Thi

s effe

ct w

as n

ot

appa

rent

whe

n pa

rtici

pant

s w

ere

pres

ente

d w

ith th

e sc

e-na

rio o

f hav

ing

a 5-

cm re

nal

tum

or.

Low

McN

eil 1

982a

#29

Surv

ival

Trea

tmen

t cho

ice:

Sur

gery

vs.

Radi

atio

n th

erap

yR

ando

miz

ed c

ross

-sec

tiona

l, be

twee

n-su

bjec

tsPo

sitiv

e an

d ne

gativ

e fr

amin

gIn

the

posi

tive

fram

ing

cond

ition

(p

roba

bilit

y of

livi

ng),

radi

a-tio

n th

erap

y w

as si

gnifi

cant

ly

less

ofte

n pr

efer

red

to su

rger

y th

an in

the

nega

tive

fram

-in

g co

nditi

on (p

roba

bilit

y of

dy

ing)

.

Low


1 3

Tabl

e 2

(con

tinue

d)

Stud

yIn

form

atio

nO

utco

me

Des

ign

Com

pare

d m

etho

dsFi

ndin

gs o

f int

eres

tM

eth-

odol

ogic

al

qual

ity

O’C

onno

r 198

9a#3

0Su

rviv

alTr

eatm

ent c

hoic

e:M

ore

toxi

c tre

atm

ent w

ith h

ighe

r su

rviv

al v

s. Le

ss to

xic

treat

-m

ent w

ith lo

wer s

urvi

val

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

Posi

tive

fram

ing,

neg

ativ

e fr

amin

g, m

ixed

fram

ing

(bot

h po

sitiv

e an

d ne

gativ

e)

Parti

cipa

nts i

n th

e ne

gativ

e fr

amin

g co

nditi

on c

onsi

dere

d th

e m

ore

toxi

c, m

ore

effec

tive

treat

men

t sig

nific

antly

less

de

sira

ble

(com

pare

d to

the

less

eff

ectiv

e, le

ss to

xic

treat

men

t) th

an th

ose

resp

ondi

ng in

the

posi

tive

or m

ixed

fram

es.

Low

Woo

dhea

d 20

11a

#31

Surv

ival

Trea

tmen

t cho

ice:

Surg

ery

vs. R

adia

tion

ther

apy

Obs

erva

tiona

l cro

ss-s

ectio

nal,

with

in-s

ubje

cts

Posi

tive

and

nega

tive

fram

ing

Parti

cipa

nts w

ere

cate

goriz

ed o

n de

cisio

nal s

trate

gy; s

trate

gies

th

at w

ere

mai

nly

data

-driv

en o

r dr

iven

by

pers

onal

exp

erie

nce.

W

hen

parti

cipa

nts u

sed

sce-

nario

dat

a (in

stead

of e

xper

i-en

ce) t

o in

form

thei

r dec

ision

s an

d w

ere

pres

ente

d w

ith a

po

sitiv

e fra

me,

they

wer

e sig

-ni

fican

tly m

ore

likel

y to

cho

ose

surg

ery

over

radi

atio

n th

erap

y co

mpa

red

to w

hen

pres

ente

d w

ith a

neg

ativ

e fra

me.

Low

Zik

mun

d 20

10a

#24

Surv

ival

Trea

tmen

t cho

ice:

Hor

mon

al th

erap

y vs

. Com

bine

d th

erap

y (h

orm

onal

+ ch

emo-

ther

apy)

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

Mul

ti-ou

tcom

e pi

ctog

raph

(sur

-vi

val a

nd m

orta

lity +

caus

e),

surv

ival

-onl

y pi

ctog

raph

Parti

cipa

nts i

n th

e su

rviv

al-o

nly

cond

ition

wer

e si

gnifi

cant

ly

less

like

ly to

say

that

they

pr

efer

red

com

bine

d th

erap

y (h

orm

onal

+ ch

emot

hera

py) t

o ho

rmon

al th

erap

y.

Low

Zik

mun

d 20

11a

#23

Surv

ival

Trea

tmen

t cho

ice:

No

adju

vant

th

erap

y vs

. Hor

mon

al th

erap

y vs

. Che

mot

hera

py v

s. Bo

th

chem

othe

rapy

and

hor

mon

al

ther

apy

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

1 × 4

pict

ogra

phs a

t onc

e, 2

× 2

pict

ogra

phs s

eque

ntia

llyH

ighe

r-num

erac

y pa

rtici

pant

s w

ere

sign

ifica

ntly

less

like

ly to

pr

efer

che

mot

hera

py w

hen

in

sequ

entia

l con

ditio

n vs

. in

the

‘all

at o

nce’

con

ditio

n. L

ower

-nu

mer

acy

parti

cipa

nts d

id n

ot

show

a d

iffer

ence

influ

ence

d by

com

mun

icat

ion

met

hod.

Hig

h

a Fou

nd a

t lea

st on

e si

gnifi

cant

resu

lt be

twee

n fo

rmat

s, on

the

disc

usse

d ou

tcom

eb D

id n

ot re

port

any

stat

istic

al a

naly

sis o

n th

e di

scus

sed

outc

ome

c Als

o co

mm

unic

ate

risk

info

rmat

ion

on c

ompl

icat

ions

on

certa

in tr

eatm

ents

, bes

ides

info

rmat

ion

on su

rviv

al/re

curr

ence

d Com

mun

icat

es ri

sk in

form

atio

n on

can

cer p

rogr

essi

on, w

hich

cou

ld b

e se

en a

s the

opp

osite

of p

rogr

essi

on-f

ree

surv

ival

e Did

not

repo

rt st

atist

ical

testi

ng o

n th

is o

utco

me,

but

test

for q

ualit

y w

as p

erfo

rmed

by

the

revi

ewer

s. Po

st ho

c te

sts re

veal

ed a

sig

nific

ant d

iffer

ence

bet

wee

n th

e ve

rbal

con

ditio

n an

d th

e ot

her

thre

e co

nditi

ons


1 3

Tabl

e 3

Sum

mar

y of

find

ings

for s

ide

effec

ts a

nd c

ompl

icat

ions

Stud

yO

utco

me

Des

ign

Com

pare

d m

etho

dsFi

ndin

gs o

f int

eres

tM

eth-

odol

ogic

al

qual

ity

Cog

nitiv

e ou

tcom

es C

arey

201

8b#2

8In

terp

reta

tion

accu

racy

Obs

erva

tiona

l cro

ss-s

ectio

nal,

with

in-s

ubje

cts

Perc

enta

ge, f

requ

ency

61%

of p

atie

nts i

nter

pret

ed a

per

cent

-ag

e on

the

risk

of si

de e

ffect

s cor

-re

ctly

, 17%

inte

rpre

ted

a pe

rcen

t-ag

e on

the

risk

of c

ompl

icat

ions

co

rrec

tly, a

nd 6

5% in

terp

rete

d a

freq

uenc

y on

the

risk

of si

de e

ffect

s co

rrec

tly.

Low

Kna

pp 2

009

(exp

. 1)a

#32

Inte

rpre

tatio

n ac

cura

cyR

ando

miz

ed c

ross

-sec

tiona

l, be

twee

n-su

bjec

tsVe

rbal

des

crip

tors

, per

cent

age,

fr

eque

ncy

Parti

cipa

nts i

n th

e pe

rcen

tage

and

fr

eque

ncy

cond

ition

s wer

e m

ore

accu

rate

than

thos

e in

the

verb

al

cond

ition

s, th

is p

atte

rn w

as si

g-ni

fican

tly d

iffer

ent f

rom

cha

nce

for

two

of th

ree

accu

racy

que

stion

s.

Hig

h

Kna

pp 2

009I

Ia#3

4In

terp

reta

tion

accu

racy

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

Verb

al d

escr

ipto

rs, (

abso

lute

) fr

eque

ncy,

com

bina

tion

of v

erba

l de

scrip

tors

and

freq

uenc

y ba

nd

Parti

cipa

nts i

n th

e fr

eque

ncy

cond

i-tio

n, d

emon

strat

ed si

gnifi

cant

ly

grea

ter a

ccur

acy

whe

n es

timat

ing

the

likel

ihoo

d of

them

selv

es o

r the

av

erag

e pe

rson

hav

ing

any

side

eff

ect f

rom

taki

ng ta

mox

ifen.

The

y w

ere

also

sign

ifica

ntly

mor

e ac

cu-

rate

in e

stim

atin

g th

e lik

elih

ood

of h

avin

g (tw

o of

four

que

stion

ed)

side

effe

cts t

han

the

othe

r tw

o fo

rmat

s.

Hig

h

Kna

pp 2

013a

#33

Inte

rpre

tatio

n ac

cura

cyR

ando

miz

ed c

ross

-sec

tiona

l, be

twee

n-su

bjec

tsFr

eque

ncy,

per

cent

age,

freq

uenc

y an

d pe

rcen

tage

com

bine

dTh

ere

was

no

sign

ifica

nt d

iffer

ence

in

acc

urac

y be

twee

n th

e th

ree

cond

ition

s, ex

ept f

or o

ne o

f six

ac

cura

cy q

uesti

ons;

par

ticip

ants

in

the

perc

enta

ge c

ondi

tion

wer

e m

ore

accu

rate

whe

n es

timat

ing

pers

onal

ch

ance

of c

atar

acts

then

in th

e fr

eque

ncy

cond

ition

.

Low

Affe

ctiv

e ou

tcom

es C

arey

201

8b#2

8Pr

efer

ence

Obs

erva

tiona

l cro

ss-s

ectio

nal,

with

in-s

ubje

cts

Wor

ds, n

umbe

rs, b

oth

wor

ds a

nd

num

bers

Mos

t pat

ient

s pre

ferr

ed b

oth

wor

ds

and

num

bers

(38%

) ove

r onl

y w

ords

(28%

), or

onl

y nu

mbe

rs

(16%

). 16

% h

ad n

o pr

efer

ence

and

0.

5% d

id n

ot w

ant a

ny in

form

atio

n.

Low

Kna

pp 2

009

(exp

. 1)

#32

Satis

fact

ion

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

Verb

al d

escr

ipto

rs, p

erce

ntag

e,

freq

uenc

yTh

ere

wer

e no

sign

ifica

nt d

iffer

ence

s on

satis

fact

ion

betw

een

the

thre

e co

nditi

ons.

Hig

h


1 3

a Fou

nd a

t lea

st on

e si

gnifi

cant

resu

lt be

twee

n fo

rmat

s, on

the

disc

usse

d ou

tcom

eb D

id n

ot re

port

any

stat

istic

al a

naly

sis o

n th

e di

scus

sed

outc

ome

Tabl

e 3

(con

tinue

d)

Stud

yO

utco

me

Des

ign

Com

pare

d m

etho

dsFi

ndin

gs o

f int

eres

tM

eth-

odol

ogic

al

qual

ity

Kna

pp 2

009I

Ia#3

4Sa

tisfa

ctio

nR

ando

miz

ed c

ross

-sec

tiona

l, be

twee

n-su

bjec

tsVe

rbal

des

crip

tors

, (ab

solu

te)

freq

uenc

y, c

ombi

natio

n of

ver

bal

desc

ripto

rs a

nd fr

eque

ncy

band

Parti

cipa

nts i

n th

e fr

eque

ncy

cond

i-tio

n an

d in

the

com

bine

d co

nditi

on

wer

e si

gnifi

cant

ly m

ore

satis

fied

with

the

info

rmat

ion

they

rece

ived

th

an th

ose

in th

e ve

rbal

con

ditio

n.

Hig

h

Kna

pp 2

016

#35

Satis

fact

ion

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

(2 ×

2)- R

isk

expr

essi

on: n

umer

ical

onl

y,

com

bine

d ve

rbal

and

num

eric

al- R

isk

qual

ifier

: "w

ill a

ffect

…",

"may

aff

ect…

"

Ther

e w

ere

no si

gnifi

cant

diff

eren

ces

conc

erni

ng sa

tisfa

ctio

n be

twee

n ne

ither

the

risk

expr

essi

on fo

rmat

s no

r the

risk

qua

lifier

s.

Hig

h

Kna

pp 2

013

#33

Pref

eren

ceR

ando

miz

ed c

ross

-sec

tiona

l, be

twee

n-su

bjec

tsFr

eque

ncy,

per

cent

age,

freq

uenc

y an

d pe

rcen

tage

com

bine

d53

% o

f the

par

ticip

ants

pre

ferr

ed th

e co

mbi

ned

form

at. H

owev

er th

ere

wer

e no

sign

ifica

nt d

iffer

ence

s be

twee

n co

nditi

ons.

Low

Zom

orod

bakh

sch

2018

b

#36

Pref

eren

ceO

bser

vatio

nal c

ross

-sec

tiona

l, w

ithin

-sub

ject

sW

ords

, bot

h w

ords

and

num

bers

Mos

t pat

ient

s pre

ferr

ed d

etai

led

info

rmat

ion

in w

ords

(42%

) or

deta

iled

info

rmat

ion

in w

ords

with

ad

ded

num

bers

(32%

) ove

r con

cise

, ge

nera

l inf

orm

atio

n in

wor

ds (5

%)

or a

refe

renc

e to

a b

ookl

et (1

6%).

Mod

erat

e

Beh

avio

ural

out

com

es G

uric

h 20

18a

#37

Trea

tmen

t cho

ice:

Lim

b am

puta

tion

vs. l

imb

salv

age

Ran

dom

ized

cro

ss-s

ectio

nal,

betw

een-

subj

ects

Posi

tive

and

nega

tive

fram

ing

Whe

n lim

b sa

lvag

e w

as fr

amed

neg

a-tiv

ely

(lim

b fu

nctio

ning

low

er th

an

gene

ral p

opul

atio

n), s

igni

fican

tly

mor

e pa

tient

s cho

se a

mpu

tatio

n th

an w

hen

limb

salv

age

was

fram

ed

posi

tivel

y (li

mb

func

tioni

ng h

ighe

r th

an w

ith a

mpu

tatio

n).

Hig

h


1 3

Tabl

e 4

Sum

mar

y of

find

ings

for q

ualit

y of

life

Stud

yO

utco

me

Des

ign

Com

pare

d m

etho

dsFi

ndin

gs o

f int

eres

tM

eth-

odol

ogic

al

qual

ity

Cog

nitiv

e ou

tcom

es B

rund

age

2005

a

#38

Inte

rpre

tatio

n ac

cura

cy +

subj

ectiv

e un

ders

tand

ing

Obs

erva

tiona

l cro

ss-s

ectio

nal,

with

in-

subj

ects

Line

gra

ph, l

ine

grap

h w

ith ra

nges

, te

xtua

l des

crip

tion,

side

-by-

side

ch

ange

(res

pons

e) b

ar c

hart,

stac

ked

chan

ge (r

espo

nse)

bar

cha

rt, st

acke

d ra

w d

ata

in b

ar c

hart

Bot

h ac

cura

cy sc

ores

and

eas

e-of

-un

ders

tand

ing

ratin

gs w

ere

high

est

on li

ne g

raph

s sho

win

g on

ly th

e m

ean

scor

es (n

o ra

nges

). Te

xtua

l de

scrip

tion

show

ed h

ighe

r acc

ura-

cies

than

the

bar c

hart

form

ats.

Bot

h re

sults

reac

hed

sign

ifica

nce.

Mod

erat

e

Bru

ndag

e 20

15b

#39

Subj

ectiv

e un

ders

tand

ing

Ran

dom

ized

cro

ss-s

ectio

nal,

mix

ed

met

hods

,, be

twee

n-su

bjec

tsSi

mpl

e lin

e gr

aph

of m

ean

scor

es o

ver

time,

line

gra

ph w

ith n

orm

s, lin

e gr

aph

with

con

fiden

ce in

terv

als,

bar

char

t of a

vera

ge c

hang

es, b

ar c

hart

base

d on

a re

spon

der d

efini

tion

(impr

oved

, sta

ble,

wor

sene

d), c

umu-

lativ

e di

strib

utio

n fu

nctio

n

With

in th

e gr

aphs

dis

play

ing

grou

p-le

vel d

ata,

ratin

gs o

n ea

se-o

f-un

der-

stan

ding

wer

e hi

ghes

t for

sim

ple

line

grap

hs o

f mea

n sc

ores

ove

r tim

e.

Mod

erat

e

Tol

bert,

201

8a#4

0In

terp

reta

tion

accu

racy

+ su

bjec

tive

unde

rsta

ndin

gR

ando

miz

ed c

ross

-sec

tiona

l, be

twee

n-su

bjec

tsLi

ne g

raph

s with

line

s goi

ng u

p m

eani

ng (1

) "be

tter"

out

com

es, (

2)

"mor

e" o

f the

out

com

e or

(3) l

ines

th

at w

ere

norm

ed to

a g

ener

al p

opu-

latio

n av

erag

e

Patie

nts i

nter

pret

ed li

ne g

raph

s with

lin

es g

oing

up

mea

ning

"bet

ter"

out

-co

mes

sign

ifica

ntly

mor

e ac

cura

tely

th

an w

ith li

nes g

oing

up

mea

ning

"m

ore"

of t

he o

utco

me

or "n

orm

ed"

lines

. Gra

phs w

ith li

nes g

oing

up

mea

ning

"bet

ter"

wer

e m

ost o

ften

rate

d as

’ver

y cl

ear’

or ’s

omew

hat

clea

r’ (n

on-s

igni

fican

t).

Low

Tol

bert,

201

9b#4

1In

terp

reta

tion

accu

racy

+ su

bjec

tive

unde

rsta

ndin

gO

bser

vatio

nal c

ross

-sec

tiona

l, m

ixed

m

etho

ds, w

ithin

-sub

ject

sPi

e ch

art,

bar c

hart,

icon

arr

ayPa

tient

s’ in

terp

reta

tion

accu

racy

w

as h

ighe

st fo

r pie

cha

rts a

nd ic

on

arra

ys, c

ompa

red

to b

ar c

harts

. Pie

ch

arts

wer

e m

ost o

ften

rate

d as

‘v

ery

clea

r’ or

‘som

ewha

t cle

ar’

(no

stat

istic

al a

naly

sis a

vaila

ble

for

patie

nts o

nly)

.

Mod

erat

e

Affe

ctiv

e ou

tcom

es B

rund

age

2003

#42

Perc

eive

d us

eful

ness

Obs

erva

tiona

l cro

ss-s

ectio

nal,

with

in-

subj

ects

Gra

phic

al d

ispl

ays o

f: no

nnum

eric

al

trend

s, m

ean

scor

es, m

ean

scor

es

with

SD

’s, m

ean

scor

es d

escr

ibed

ve

rbal

ly, c

hang

e in

mea

n sc

ores

af

ter s

ix m

onth

s, in

divi

dual

cha

nge

scor

es o

f tw

o, th

ree

or fi

ve d

ivis

ions

, no

rmal

ized

/raw

scor

es o

f 20t

h an

d 80

th p

erce

ntile

(not

cle

ar w

hat

kind

of g

raph

s the

num

bers

wer

e di

spla

yed

in)

Parti

cipa

nts f

ound

gra

phic

al d

ispl

ays

of m

ean

scor

es th

e m

ost u

sefu

l, bu

t no

sign

ifica

nt d

iffer

ence

s wer

e fo

und.

Mod

erat

e


1 3

a Fou

nd a

t lea

st on

e si

gnifi

cant

resu

lt be

twee

n fo

rmat

s, on

the

disc

usse

d ou

tcom

eb D

id n

ot re

port

any

stat

istic

al a

naly

sis o

n th

e di

scus

sed

outc

ome

Tabl

e 4

(con

tinue

d)

Stud

yO

utco

me

Des

ign

Com

pare

d m

etho

dsFi

ndin

gs o

f int

eres

tM

eth-

odol

ogic

al

qual

ity

Bru

ndag

e 20

05a

#38

Perc

eive

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1 3

Discussion

In this review, we summarized the literature on methods of communicating probabilistic information in oncological treatment decision-making processes.

For communication of disease progression information, we found that the type of framing has an influence on treat-ment choice. This has also been observed in communica-tion in general health care [8]; positive framing (in terms of survival instead of mortality) may increase acceptance of treatments. However, in this review, we could not draw any conclusions regarding the direction of the effect due to the incomparability of treatment choices and to the low methodological quality of the studies.

Furthermore, we found that limiting the amount of sur-vival information that the patient has to process at once in a graphical display could benefit the patients’ understanding. There is growing evidence supporting the so-called ‘less is more’ approach in the field of decision-making; simpler forms of communication can make it easier for patients to use the information during decision making [24]. Addition-ally, it has been argued that the complexity of information may contribute to patients’ experience of uncertainty [43].

We found that precise and defined risk information (e.g., percentages) about side effects was better understood than verbal information. Here, however, a potential source of bias could exist in the way that outcomes were measured. To prevent recall bias, the risk format used in the outcome assessment should not be similar to the format used as an intervention. For example, comparing percentages to another format would not be completely ‘fair’ when the answer to an accuracy question has to be stated in percentages, as is the case in at least two of three accuracy studies. However, find-ing a suitable assessment format that will not be influenced by recall might be challenging in these cases.

For display of HRQL information, we did not find con-sensus among the included studies on which type of graphs to use. Whereas line graphs and pie charts seemed to result in better cognitive and affective outcomes, these results were only based on one significant result each. While a previous review in general health care [8] recommends using icon arrays or bar charts to display outcome information, recent studies on the display of HRQL information specifically, suggested using pie charts [44, 45]. Another issue is the direction of display of HRQL data when using bar or line graphs. Where other literature in HRQL research—beyond the scope of this review—recommends the graphical display direction of better = higher [45, 46], we did not find enough evidence—one study—to recommend on the direction of HRQL graphs [40].

Great heterogeneity was found not only in the study results but also in methodology and in the compared

communication formats. This precludes us from stating separate practice recommendations for the three different types of risk information (disease progression, side effects and complications and HRQL). Most importantly, several studies investigated the same communication methods and found different effects on outcomes. Therefore, a meta-anal-ysis would be of great help. However, for meta-analysis to be possible, the heterogeneity

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