Chapter I: Balancing the Presentation of Information and Options

2012 UPDATED CHAPTER I:BALANCING THE PRESENTATION OF INFORMATION AND OPTIONS(Original Title: “Balancing The Presentation Of Options”)

SECTION 1:
AUTHORS/AFFILIATIONSRadboud University Nijmegen MC,
Nijmegen
The University of Texas MD Anderson
Cancer Center

The
Netherlands

Purva Abhyankar

University of StirlingUK

Jennifer Blumenthal-Barby

Baylor College of Medicine

USA

Paulina Bravo

Pontificia Universidad Catolica de

Chile

Peep Stalmeier (lead)
Robert J. Volk (co-lead)Angela Buchholz
Nananda Col

University Medical Center HamburgEppendorf
University of New England, College of
Osteopathic Medicine

USA

GermanyUSA

Elissa Ozanne

UCSF Medical Center

USA

Dale Collins Vidal

Dartmouth Medical School

USA

NOTE
The original title for this dimension (“Balancing The Presentation of Options”) is too narrow in
scope. The original title is limited to the balance in type and number of “options” presented (i.e.,
which and how many options), and does not extend to the balance of information presented
within each option. Given that the literature highlights the importance of complete, balanced, andunbiased presentation of all available options as well as information about all aspects of those
options, we feel that the chapter title should be changed to “Balancing The Presentation ofInformation and Options”).
The original dimension chapter is included here as an Appendix.

Suggested Citation:
Stalmeier P, Volk RJ, Abhyankar P, Blumenthal‐Barby J, Bravo P, Buchholz A, Col N, Ozanne E, Vidal DC. (2012). Balancing thepresentation of information and options. In Volk R & Llewellyn‐Thomas H (editors). 2012 Update of the International Patient
Decision Aids Standards (IPDAS) Collaboration’s Background Document. Chapter I. http://ipdas.ohri.ca/resources.html.

Chapter I: Balancing the Presentation of Information and Options

SECTION 2:
CHAPTER SUMMARY
What is this dimension?
The extent to which a decision aid is “balanced” is the extent to which it presents— incontent, in format, and in display—the available options and the positive and negative
information about each of those options in a complete and neutral manner. The intention is toenable individuals to understand the options and their relevant information without influencing
those individuals towards favouring or rejecting any particular option.
What is the theoretical rationale for including this dimension?
The basic purpose of a patients’ decision aid is to foster informed decision making byimproving the understanding of risk and benefits of all treatment options, improving thecomprehension of probability information about their condition and its treatment, creating more
realistic expectations about the consequences of options, and improving clarity about personalvalues. In order to achieve these goals, information must be presented in a complete and neutral
manner.
If information is incomplete, people may inadvertently overvalue or devalue a treatment
option. If information is presented in a non-neutral manner, that can stimulate in individuals
cognitive biases that can unduly affect people’s knowledge, their perceptions of risks andbenefits, and, ultimately, their preferences. These untoward effects would, in turn, undermine
the achievement of the decision aid’s purpose. At the same time, there is considerable debate
about whether or not decision aids ethically ought to “nudge” patients towards options for which
there is clear strong evidence for beneficial outcomes.
What is the evidence to support including or excluding this dimension?
A literature search for articles published since 1980 identified 878 papers; among these,
38 reported on the “balance” of patient decision aids. Three more papers were identified in the2009 Cochrane Collaboration’s Systematic Review of randomized controlled trials of patientdecision aids. Among the resultant total of 41 eligible papers, only 10 studies had more than 10
respondents.
Among these 10 studies, we identified which papers explicitly reported that the balanceof the relevant decision aids was assessed, then, in each of those papers, we determined how thatassessment was carried out. In all cases, the balance of the decision aid was exclusively assessedfrom the users’ or patients’ perspective. While studies tended to use a 5-point Likert-type scale,
we found inconsistency in the response formats used.
Finally, we focused on the extent to which the assessment of balance had been affectedby using, in the relevant decision aids, side-by-side tables to compare and contrast the available
options. Our analysis suggests that the inclusion of a summary table of any kind in which theoptions are compared was associated with more subjects (ranging from 70% to 96%) judging theinformation as “balanced” in its presentation.
We conclude by highlighting the need to a) develop a consensus on the definition of“balance” and on the methods used to assess balance, and b) carry out a range of comparative
studies investigating different ways to improve the balanced presentation of information, as well
as different ways to capture respondents’ assessments of the extent to which a decision aid isbalanced or not.

2

Chapter I: Balancing the Presentation of Information and Options

SECTION 3:
DEFINITION (CONCEPTUAL/OPERATIONAL) OF THIS QUALITY DIMENSION
Description of Literature Review
For this Section 3 and for Section 4, a literature search was performed using the following terms:
balanced presentation of information, unbiased presentation of information, non-directive
presentation of information, and neutrality. A total of 41 papers were selected for inclusion inthis review (see Section 5 for further details about the selection process). We examined theselected papers from two perspectives: 1) whether and how the concept of “balance” wasdefined; and 2) what rationale was provided for “balancing the information and options” within
decision aids. Of the 41 articles, only 12 defined this quality dimension, explicitly or implicitly
and explained the rationale for including the dimension as a criterion for assessing the quality ofDAs. The remaining articles provided no conceptual or theoretical details; they were mere
descriptions of the development and/or testing of DAs, simply providing findings regarding theperceived balance of information among users.
We extracted the following information from the subset of articles: the terms used for the quality
dimension; how the quality dimension was defined; and the rationale for including the quality
dimension. A summary of the literature review can be found in Table 1.
a)Updated Definition“Balance” refers to complete, unbiased and neutral presentation of the relevant options and theinformation about those options—in content, in format, and in display—in a way that enables
individuals to process this information without bias.
The new definition emerged from the literature review, and reflects the following points.


Balance refers to a) the content of the information (i.e., what information is presented, suchas risks, benefits, procedures), b) the format of presentation (e.g., framing, absolute vs.
relative, words vs. numbers), as well as c) the display of information (e.g., graphic vs. text)(Wills 2003).

Balance occurs when information is complete (i.e., all relevant information is provided).
Thus, all available options, which may include an option “to do nothing”, are presented, andinformation on all aspects of treatment— including risks, benefits, and treatment
procedures—is presented (Feldman-Stewart 2007, Griffith, 2008).

Balance occurs when there is equal emphasis on presenting positive and negative information(Feldman-Stewart 2007, Evans 2007, Zikmund-Fisher 2008).

Balance is achieved when information is unbiased; the information is presented in a nondirective manner, without attempting to influence the uptake (or rejection) of any option(Martin 2011, Roberts 2004).

3

Chapter I: Balancing the Presentation of Information and Options

Balance occurs when information is presented in a neutral manner, i.e., in a way thatminimises cognitive biases (such as order effects, framing effects, primacy-recency bias, ordenominator bias), avoids placing a value judgement on the information, and places equal
weight on equally important information (Ubel 2010).

Balance refers to the presentation of information in a way that enables individuals to process
this information without bias (Winterbottom, 2008).

b)

Changes to the Definition

The original chapter did not provide an explicit definition of this quality dimension. However,there was an implication that information presented in a balanced manner is that which does not
inadvertently persuade the user to accept or reject a particular option.
The new definition has the following characteristics:


It includes the attribute “complete” – which refers to the presentation of all the relevant
options (which may include the option of “doing nothing”) and the presentation of
information on all aspects of those options (i.e., risks, benefits, uncertainties, procedures,consequences).



It includes the attribute “unbiased” – which refers to presentation in a way that does notdeliberately or inadvertently influence the uptake or rejection of a particular option.



It includes the attribute “neutral” – which refers to presentation in a way that places equal
weight on positive and negative information and avoids placing a value judgement on theinformation.

It highlights that “balance” applies to the content of information (i.e., what information ispresented) as well as the format and display of information (i.e., how it is presented anddisplayed).

It refers to the impact of presentation on individuals’ information processing (i.e., their
gaining of knowledge, their formulation of risk & benefit perceptions, and their constructionof preferences).

c)Emerging Issues with Definitions

 Challenges to this new definition arise from the large amount of data emerging from thedecision sciences and behavioural economics that demonstrate how difficult it is to avoid
influencing decisions in one direction or another, given a) the large number of biases that are
induced by how information is framed and b) the fact that information must be framed one
way or another.
 The new definition includes a provision that the presentation of the “do nothing” option may
be necessary for a balanced decision aid. Whether the presentation of the “do nothing” option

4Chapter I: Balancing the Presentation of Information and Options

is necessary for a balanced decision aid is currently under debate. We recognize that for somehealth-related decisions, it would seem odd to offer the “do nothing” option, such as cases inwhich the expert community’s opinion is to treat in one way or another, or in which thepatient wants a particular treatment. Thus, this could be conceptualized as “the patient mustbe given information about the consequences of doing nothing.” Giving information about
the consequences of doing nothing is what is ethically important as outlined by The
American Medical Association’s statement on Informed Consent (http://www.amaassn.org/ama/pub/physician-resources/legal-topics/patient-physician-relationshiptopics/informed-consent.page).

SECTION 4:
THEORETICAL RATIONALE FOR INCLUDING THIS QUALITY DIMENSIONSa)

Original Theoretical Rationale

The goal of an autonomous decision also implies that the presentation of information should notfavour a specific option (Hope, 1996). There is empirical evidence that variations in thepresentation of information affects how health is perceived, and how therapeutic choices are
made and acted upon (Herrin, 2001; Jorgensen & Gotzsche, 2004). For example, depending on
the framing of the data (e.g., using mortality or survival rates), patients make different treatment
choices (Bohmer & Sepucha, 2003). Furthermore, the way in which information is presented
influences patients’ satisfaction, knowledge, understanding, participation in decision-making,continuance of chosen options, coping with their situation, and search for further information(Christensen-Szalanski et al., 1987; Broyles et al., 1992; Inglis & Farnill, 1993; Phatouros &Blake, 1995; Michie et al., 1999).
Unbalanced information can create therapeutic expectations that are unrealistic, and can leadpatients to unwittingly undertake interventions that carry chances of harms that they might notwillingly accept. Since it is not only dishonest but also unethical to create unrealistic
expectations or to obscure the chances of harm (Raffle 1997; 1999; 2001), patient decision aids
must aim to present information in a balanced manner that does not inadvertently persuade theuser to accept or reject a particular option.
b)

Updated Theoretical Rationale

The theoretical rationale for this dimension remains largely unchanged from the original
rationale. Of the 41 papers included in this review, a rationale for balancing the presentation of
information and options was provided in only 6 of the 12 included papers, none of whichreferred to any specific theory or framework (see Table 1). (See also Table 2, for outlines of
relevant methodological comments provided by these papers.) However, most explain therationale in terms of the psychological processes that are affected by the cues in the context ofthe decision information.
A summary of the relevant theoretical points is given here.

5Chapter I: Balancing the Presentation of Information and Options

To enable informed decision making, information must be unbiased and must provide abalanced view (Roberts 2004).

The basic purposes of providing information in decision aids are to create more realistic
expectations about the consequences of options, to improve understanding of risk andbenefits of options, to improve understanding of probabilistic information, and to improve
clarity about personal values. In order to achieve these goals, information must be presented
in a balanced manner and without bias (Zikmund-Fisher 2008).

Some aspects of comprehension may be influenced by information-processing tendencies
that are naturally associated with the structures and functions of our central nervous system.
When information is not complete and balanced, people may ignore missing but relevant
information, devalue a treatment option partially or completely, or make inferences about
unavailable information based on the information that they do have (i.e., people may engage
in biased information processing) (Feldman-Stewart, 2007).



The manner in which information about options is presented influences people’s perceptionsof those options. Some formats of information presentation introduce cognitive biases (e.g.,order, framing, primacy, or recency effects). Cognitive biases refer to heuristic strategies
used by individuals that may lead to judgements that depart from accepted norms ofrationality. These cognitive biases can unduly affect people’s knowledge, perceptions of risks
and benefits, and preferences. Presenting information in an unbalanced manner creates
opportunities for cognitive biases, and risks placing a value judgement on the informationthat is inconsistent with the goal of neutrality (Ubel, 2010).



Certain types of information (e.g., patient “narratives”; see Chapter E, “Using Personal
Stories”) may encourage the use of heuristic processing. Processing information heuristicallyrelies on the use of “rules of thumb” based on an individual’s past experiences andobservations. In such circumstances, the context of the message, such as who is delivering
the information, is more influential in decision making than the message content, such as
information about the risks and benefits of treatment options. When patient narratives arepresented, individuals may well be persuaded by others’ stories because of a characteristic of
the narrator rather than the content of the message (Winterbottom 2008).

The information extracted from the reviewed papers was synthesised in the light of theinformation processing paradigm to provide the updated theoretical rationale.
The basic purpose of a patients’ decision aid is to foster informed decision making, by improving
the understanding of risk and benefits of options, improving the comprehension of probability
information, creating more realistic expectations about the consequences of options, andimproving clarity about personal values. An informed decision is made when individuals take
into account the consequences of all the available options, b) assess the likelihood and value of
those consequences without bias, and c) make trade-offs between these evaluations (Janis andMann, 1977, Bekker et al. 1999). This requires significant cognitive resources and effort. As
human beings, we have finite cognitive resources for acquiring, storing, processing and

6

Chapter I: Balancing the Presentation of Information and Options

retrieving decision-related information (Payne & Bettman, 2004). As a result, we employ two
types of strategy to process information (Chaiken, 1980):


Heuristic processing (system 1) – involves unconscious ‘rules of thumb’ often triggeredby the cues in the environment/context of the decision information, requires little
cognitive effort, and is less time-consuming.
Systematic processing (system 2) – involves analytical strategies, requires considerable
conscious effort and is time–consuming.

For decisions that involve some degree of uncertainty or difficult trade-offs, individuals have anatural preference for the heuristic strategies as they minimise the load on their cognitive
resources. This means that they are more likely to be influenced by the subtle cues in the context
of the information (i.e., how information is presented) rather than the content of the information(such as risks and benefits of options) (Baron, 2000, Payne & Bettman, 2004). If information isincomplete, people may inadvertently overvalue or devalue a treatment option. If information ispresented in a non-neutral manner, that can stimulate a range of cognitive biases that can unduly
affect people’s knowledge, their perceptions of risks and benefits, and, ultimately, theirpreferences. These untoward effects would, in turn, undermine the achievement of the decision
aid’s purpose. For this reason, it is important that decision aids present all the relevant options
and information about those options in a complete, unbiased and neutral manner – in content,
format and display.

7

Chapter I: Balancing the Presentation of Information and Options

Table 1. Definitions and Theories About Balancing the Presentation of Options and Information in Patients’ Decision Aids:
A Summary of Relevant Empirical Papers
Terms Used To
Describe The Quality
Dimension
Author, Year

(Elwyn, O'Connor
et al. 2006)(Elwyn, O'Connor
et al. 2009)(Evans, Elwyn
et al. 2007)(Feldman-Stewart,
Brennenstuhl et al.
2007)(Griffith, Fichteret al. 2008)(Martin, Brower
et al. 2011)(Roberts, RaynesGreenow et al.
2004)

How do the authors referto this quality dimension?
E.g., balanced
presentation; unbiased
presentation; any otherreference?
DAs are unbiased

Definition of ‘Balance’
How do the authors define‘balance’?

Theorya. Which theoretical framework is described?
b. What rationale is provided for balancing the presentation of
options?

N/A

N/A

N/A1

N/A

N/A

Balance of theinformation

N/A

N/A

Accuracy
Balance/Imbalance

Clarity and balance
Importance of unbiased(accurate) recall of
information.
DAs use information thatis unbiased.
DAs are non-directive inthe sense that they do not
aim to influence theuptake of either option.

The information must be
relevant, accurate, updated
and complete.
Subjective measurementof DAs which avoids
inclination to one
decision.
Accurate recall of
information.

N/A

N/A

N/A

No influence on the
uptake of either option.

8

Rationale:
To assist in informed decision making, information must be
unbiased and based on current high quality evidence. Must give abalanced view and not ignore uncertainties and scientificcontroversies.

Chapter I: Balancing the Presentation of Information and Options(Ubel, Smith et al.
2010)

Neutrality-Absence of cognitive
biases (e.g., order effects
such as recency andprimacy bias, denominatorbias).
-Goal of DA developers:
to inform patients aboutalternatives in a neutral
manner.
-Judgment about whether
risk or benefit information
is more important would
be a value judgment thatdeparts from neutrality.
-Aim should be to place
equal weight on equallyimportant information.

Rationale:
Cognitive biases (i.e., order effects of recency and primacy biases)
negatively affect knowledge comprehension.
Participants who did not receive “bias-eliminating” contextual
information and received tamoxifen risk information last andbenefit information first had higher knowledge scores than those
who received risk information first, but no such order effect wasseen among participants who received “bias-eliminating” risk
context information. Order effects also affected how worried they
were about the side effects of tamoxifen, and how impressed they
were with tamoxifen’s ability to prevent breast cancer; no suchorder effect was seen among participants who received risk
context information.
Rationale:
Neutrality avoids value judgments.
Rationale:
The goal of providing relevant, complete and balanced information
is to: create more realistic expectations about choiceconsequences, improve understanding of probability information,and improve clarity about personal values.

(Wills andHolmes-Rovner
2003)

Complete and balanced
treatment-related
information

What happens when information is not complete and balanced:
people may ignore missing information, devalue a treatment
option partially or completely, or make inferences about
unavailable information based on the information they do have.

Not explicitly definedSome aspects of comprehension may be influenced by information
processing tendencies that are naturally associated with the central
nervous system structure/function of humans.
However, no explicit reference to any theoretical framework to
explain how and why ‘format’ affects understanding, preferences,and choices.

9

Chapter I: Balancing the Presentation of Information and Options(Winterbottom,
Bekker et al. 2008)

Balanced information
about the advantages anddisadvantages of all thetreatment options.

Presentation of
information in a way thatenables individuals toprocess this information
without bias.

Rationale:
It is likely that patient narratives encourage the use of heuristic
processing. Processing information heuristically relies on the useof ‘rules of thumb’ based on an individual’s past experiences andobservations (Chaiken 1980). In such circumstances, the context ofthe message, such as who is delivering the information, is more
influential in decision making than the message content, such as
information about the risks and benefits of treatment options(Chaiken 1980).
No explicit reference to theoretical framework, but the above
rationale refers to heuristic/systematic information processing
model.

(Zapka, Geller
et al. 2006)

Complete and clear
information; bias inselection and presentationof information

Not explicitly defined

No rationale provided other than stating that ‘what facts arepresented to women about screening and how information ispresented, is basic to informed decision-making’.

Not explicitly defined but
seems to refer to:
Rationale:
A key aim of many decision aids is to modify patients’ unrealistic
expectations (e.g., elevated beliefs about the likelihood of a goodoutcome), by presenting specific probability information regarding
both good and bad health outcomes of their decisions and by
describing these outcomes in imaginable and identifiable formats.

Presenting specificprobability information
regarding both good andbad health outcomes of(Zikmund-Fisher,
Balanced presentation of
their decisions and by
Ubel et al. 2008)
risks and benefits
describing these outcomes
In order to provide balance against patients’ natural inclination to
in imaginable andfocus on the benefits of potential medical treatments, a central part
identifiable formats –of many decision aids is a thorough discussion of the risks
leading to better
associated with interventions.
comprehension andguarding against
undesirable biases.
1. The paper only mentions that balance is incorporated into the information dimension of the instrument. The paper describes the development of
IPDASi, but there is no description of what balance constitutes.

10Chapter I: Balancing the Presentation of Information and Options

Table 2. Methodological Comments About Balancing the Presentation of Options andInformation in Patients’ Decision Aids: A Summary of Relevant Empirical Papers

Ways of Enhancing Balance
Author, Year
What techniques, if any, have been described that enhancebalanced/unbiased presentation?
(Elwyn, O'Connor et al. 2006)(Elwyn, O'Connor et al. 2009)(Evans, Elwyn et al. 2007)(Feldman-Stewart,
Brennenstuhl et al. 2007)(Griffith, Fichter et al. 2008)(Martin, Brower et al. 2011)

This paper highlights the risk of using patient stories, since these could
introduce bias due to self-identification.
N/A
The presentation of uncertainty is an important but difficult task.
Balance can be enhanced when presenting contrasting information,
opinions and experiences. These authors highlighted the difficulty when
dealing with sensitive issues.
Imbalance appears when: 1) for treatment options there is no descriptionof treatment procedures; and 2) more emphasis is given to false
positives than false negatives.
There is conflict between providing accurate information andoverloading the patient with information. One solution is to label thenumeric values as estimates and to provide further information about
uncertainty when the patient requests it.
Demonstrate how to up-date the information is by providing citations.
Patient narratives should be avoided until the potential biasing effect isbetter understood.
The DA that included a “no screening option” was scored as less infavour of screening.
Graphical images that provide a visual representation of numbers (e.g.,
pictogram or speedometer) may support recall of probabilities.

(Roberts, Raynes-Greenow
et al. 2004)

N/A(Ubel, Smith et al. 2010)

Present contextual risk information (information on competing risks thepatients would face over the next five years, such as risks ofexperiencing colon cancer, a heart attack, or all-cause mortality).
However, the authors caution: “Is risk context information the solution
to this problem? We think this would be premature…needs to be
replicated before such an approach could be deemed a success…we do
not have an adequate understanding of why contextual information
about competing risks eliminated the order effect…our goal is not toconvince DA developers that we have solved this problem…toencourage researchers to focus more efforts….” “Second, the ordereffects were small, and not necessarily of clinical significance.”11

Chapter I: Balancing the Presentation of Information and Options(Wills and Holmes-Rovner
2003)

Ways of eliminating bias/improving understanding/risk communication:
 Framing effects can sometimes be reduced/eliminated bypresenting probabilities as ‘‘natural frequencies;’’ e.g. ‘‘1 in 10
people’’ Understanding can potentially be improved by the use of absoluterisk descriptions and by placing risks in context for a given patient.
 There is also a need to tailor the format of risk communication to
an individual’s level of numeracy (mathematical literacy), In routine clinical encounters, careful attention should be paid topresenting ‘‘balanced’’ information in both positive and negative
frames.
 Graphics can improve the understanding of numerical probability
information, by showing patterns that might not otherwise berecognized, facilitating numerical computations, and attracting
attention to information. Drawbacks include the possibility thatpeople may dislike some types of displays or may fail tocomprehend the key points of graphics, and that graphics may
actually detract from understanding. Unfortunately, the formats
that might be favored by a number of people may also result in lessappreciation or misunderstanding of information.
 Understanding may also benefit from placing information incontext; ‘‘risk ladders’’ and ‘‘action standards’’ may be reference
points for decision making
Aside from the well-known heuristics/biases paradigm, few novel
theoretical approaches have been proposed to improving
comprehension of risk/benefit information.

(Winterbottom, Bekker et al.
2008)(Zapka, Geller et al. 2006)

No methodological comments provided.

No methodological comments provided.
Including graphs in risk communications is essential to support an
informed treatment decision-making process. Pictographs make risk
(Zikmund-Fisher, Ubel et al.
statistics easier to interpret, reducing biases associated with incremental
2008)
risk presentations.
1. This paper only mentions that balance is incorporated into the information dimension of the instrument.
The paper describes the development of IPDASi, but there is no description of what balance constitutes.

c)Emerging Issues/Research Areas in Theory/Rationale
Theoretical and ethical challenges are created by the fact that decision aids do not exist in a
vacuum. Patients (and clinicians) bring to the table many pre-existing biases. These biases
can be based on misinformation, cognitive or affective heuristics and biases (e.g.,
availability bias resulting in aversion to one treatment option because of one case example
that stands out in one’s mind—perhaps seen on the news media), or non-evidence based
practice norms (e.g., only offering patients surgery despite evidence that observation andsurgery are equivalent in terms of survival for men with low risk prostate cancer) (Wilt,
Brawer et al. 2012).

12

Chapter I: Balancing the Presentation of Information and Options

We acknowledge that there is debate about whether decision aids should strive for neutrality
or in some situations attempt to counter or undo known biases. If the ultimate goal of
medical decision making is to have patients make an informed decision based on balanced
consideration of the options, an argument could be made that it is sometimes ethicallyappropriate for decision aids to not be balanced insofar as they are countering an existingbias so as to bring the patient to an overall balanced decision. For example, decision aids
could describe misconceptions or non-evidence based practice patterns. The more generally
accepted perspective is that developers should always strive for balance in the aids they
produce. A helpful distinction might be made between decision aids and health promotion
tools. The term “health promotion” is used to describe educational products that promotehealthy behaviours (e.g., stopping smoking, use of sunscreen) for which there is consensus
that these behaviours are generally good for people’s health.



There is also ongoing debate about whether decision aids should always include a default,“do nothing” option when there is clear evidence of benefit associated with one or more
specific options. In some situations, a “do nothing” option would not be supported byevidence. One reasonable response to this situation is to acknowledge that decision aids
should provide information about the consequences of doing nothing while not presenting it
as a reasonable option.
SECTION 5:
EVIDENCE BASE UNDERLYING THIS QUALITY DIMENSIONa)

Updated Evidence BaseOur Literature Search Strategy
A literature search of Ovid MEDLINE was performed for articles that reported information
about the balance of patient decision aids, published since 1980. The following search teams
were used: (decision aid or decision support) and (equitabl* or balanc* or neutral* or bias*
or slant* or inequitabl* or unbias or unbalanc*). The search led to 875 articles identified forreview. We searched for studies that included samples of individuals who received a DA;
thus studies without a control group (e.g., feasibility studies of DAs) could also be included.
Articles were coded as follows: 1, “Accept: clear evidence that balance/bias of patientdecision aids, or other patient educational materials, is addressed;” 0, “Reject: no evidence
that balance/bias of patient decision aids, or other educational materials, is addressed;” or 2,“Unsure: agreement to be established by review team.”
Of these 875 articles, 45 were coded as “accept”, of which 9 were later deemed irrelevant (6were conference contributions, 1 dealt with modelling, 1 dealt with diagnostic tests, and 1
was a primer). Nineteen articles were coded as “unsure”, of which 2 were accepted, leaving
38 papers for abstraction.
In addition, all articles included in the 2009 Cochrane Collaboration’s Systematic Review of
randomized controlled trials of patient decision aids were reviewed for any mention of the13Chapter I: Balancing the Presentation of Information and Options

search terms listed above, yielding 15 papers. Of the 15 Cochrane papers, 1 was relevant, and2 additional papers (co-authored by a member of the research team) were identified. This
increased the number of papers for abstraction to 41.
Our Appraisal of the Abstracted Papers
We examined these 41 papers from two perspectives:
1. We determined whether or not the balance of the relevant decision aids was assessed, and,
when it was assessed, we determined how that assessment was carried out.
2. Among those papers in which the balance of the relevant decision aids had been assessed,
we examined the extent to which the assessment of balance had been affected by using sideby-side tables in the relevant decision aids to compare and contrast the available options.
1. The Assessment of Balance
Among the 41 assessed papers, we searched the results sections for assessments of balance.
Studies without a control group (e.g., feasibility studies of decision aids) were also included.
10 papers reported such assessments; see Table 3, column 1.
For each of these 10 papers, we computed the percentage of respondents who found therelevant decision aid completely balanced; see Table 3, columns 2 and 3. In all cases, thebalance of the decision aid was exclusively assessed from the users’/patients’ perspective.

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Chapter I: Balancing the Presentation of Information and Options

Table 3. Ten Studies that Report Users’ Ratings of the Balance of a Decision Aid
Author & Year
(Mathieu, Barratt
et al. 2010)(Smith, Trevena
et al. 2010)(Griffith, Fichteret al. 2008)(Spunt, Deyo et al.
1996)(Anderson, Carter
et al. 2011)(Watson, Hewitson
et al. 2006)(Drake, EnglerTodd et al. 1999)(Lalonde, O'Connor
et al. 2004)(van Tol-Geerdink,
Stalmeier et al.
2006)(van Tol-Geerdink,
Leer et al, in press)

Samplesize*

Subjects who reported
the aid was balanced.
n (%)

Was an evidence
table included in
the aid?

Was any table
included in the aid?

117

66 (57%)

no

no

334

160 (48%)

no

no

106

17 (16%)

unclearunclear239

133 (56%)

unclearunclear19

17 (89%)

no

yes

468

439 (94%)

no

yes

38

27 (71%)

yes

yes

16

13 (80%)

yes

yes

150

142 (95%)

yes

yes

153

147 (96%)

yes

yes

*Only studies with at least 10 subjects were included.
While studies tended to use a 5-point Likert-type scale, we found inconsistency in the response
formats used. See Table 4.

15

Chapter I: Balancing the Presentation of Information and Options

Table 4. Summary of Decision Aid Studies in Which the Balance of the Aid was Assessed
AuthorYear

Decision context
and how balance
was considered.

Definition of“balance”.

Whose
perspective wasassessed?

Response categories forassessing balance.

Description oftable contrasting
options.

Results: How
many rate as“balanced”?

5-point scale in response toquestion about thepresentation being
Table include
17 of 19balanced:(Anderson, Equally emphasized
benefits, side
No definition
22 women withparticipants rated
 Strongly disagree
Carter et al. downsides andeffects arguments,
offered.
ovarian cancer.
aid as neutral Disagree
2011)benefits.
with some(89%).
numbers.
 Neutral
 Agree Strongly agree
5-point
scale:
Open-ended question
 Clearly slanted to testing
84% women (N =concerning fairness
No definition
 Slightly slanted to testing Worksheet format 21) and 53% men
21 women ofand balance during
offered. Implied that(Drake,with risks
advanced maternal  Completely balanced(N = 17)
pilot test; inbalance wasEngler-Todd
age and 17
presented
using
chose
evaluation trial close Slightly slanted to noequivalent toet al. 1999)
spouses.
icon arrays.
“completely
ended questions also
testing
fairness.
balanced.”concerning balance Clearly slanted to no
and fairness.
testing
No tables were5-point scale:used (according toPrimary measures: Strongly in favor of
author).
16% rated aid is
Single sex
clarity and balance
screeningneither in favour
volunteer focus(Griffith,comparing video DA
 Somewhat in favor
Mentions
No definition
nor againstgroups. 12 groups
Fichter et al. versions with andcomparison of theoffered.
 Neither in favour nor
screening, forat 3 sites, total of2008)
w/o explicit
different tests, notagainst screening
both versions.
106.
discussion of option
clear if the “no Somewhat against
to not be screened.
screen” option is Strongly againstin the table.

16Chapter I: Balancing the Presentation of Information and Options

16 patients
No definition
3-point scale:
Risk of heart
receivingoffered. Provided
 Slanted towards lifestyledisease and stroke 80% rated aid as“balanced examples pharmacologic(Lalonde,
optionspresented next to balanced (12 oftreatment forof how others go
O'Connor Slanted toward taking
16).
benefits using
hypertension
through the steps”
et al. 2004)
drugs
worksheet format.
and/or(of making the Balanced
dyslipidemia.
decision)
No explicit
definition, but
5 point Likert scale:
explains how to
Effect of DA on
49% (57) rated
 Clearly towards notachieve balance.
knowledge and
Women age 38-45
aid as completely
screening
Present cumulative
ability to makewho accessed thebalanced.
 A little towards notrisks over an
informed decisionwebsite and met(Mathieu,
screeningappropriate timeabout mammogram
No table included.
eligibility criteria
Barratt et al.
29% (34) rated
 Completely balanced
screening at age 40. frame, use diagrams(117 completed
2010)
aid as a little A little towards having“(N)eed for balanced, for probabilities, use
the acceptability
towards notscreening
evidence –based info large denominators,
questions).
screening.
 Clearly towards havingthat enables informed show event rates as
screeningwhole numbers, anddecision making.”
provide context toconsider the effect.
334 adults aged
No, risks on
between 55 and 64
48% (160) rated
separate pages,
with low
Balanced and fair
(Smith,No definition
aid as completely
Not mentioned.
mix of two- andeducation
information on bowel
Trevenaoffered.
balanced.
multicolour risk
attainment eligible
et al. 2010) cancer screening.
figures.
for bowel cancer
screening.
5-point scale: Clearly slanted-- surgery
Balance: completely
 Slightly slanted—surgery Author did not
56% (133) rated
239 patients(Spunt,balanced (if the
respond to query
No definition
 Completely balanced
it “completely
affected with low
Deyo et al. patients found theuse of table
offered.
 Slightly slanted-balanced.”back pain.
1996)
program to beformat.
nonsurgical therapy
balanced).
 Clearly slanted-nonsurgical therapy.
Development of a
DA to improve
decision quality andadherence to chosen
option.

17

Chapter I: Balancing the Presentation of Information and Options(van TolGeerdink,
Stalmeieret al. 2006)

Was the information
presented in a
structured andbalanced way?

No definition
offered.

(van TolGeerdink,
Leer et al.
submitted)

Was the information
presented in a
structured andbalanced way?

No definition
offered.

(Watson,Hewitsonet al. 2006)

RCT of a decision aid
about PSA testing.
Assessed whether the
information in the aid
was presented in a
No definition“balanced way.”offered.
Also used a measureof decisional balance
as a measure of
attitudes toward PSA
testing.

5-categories: Clearly in favor of lower
dose
Probabilities of Somewhat in favor ofoutcomes
95% (142)
lower dose
150 prostate
presented side-by- choose balanced
cancer patients.
 Balancedside using pie
in DA group.
 Somewhat in favor ofcharts.
higher dose
 Clearly in favor of higher
dose
4-categories: Yes, the information was
240 patients with
Probabilities ofbalanced
96% (147 of 153)
prostate cancer
outcomes No, in favour of surgery
chose balanced
choosing between
presented in an No in favour of
option.
surgery or
evidence tablebrachytherapy
radiotherapy.
using pie charts.
 No, in favour of externalbeam radiotherapy

Men from 11 GP
Not fully stated. One
practices, recruited
option was, information
through
was presented in acomputerized“balanced way.”registries.

18

Aid included asummary of thepotential benefits
and downsides oftesting.
Information
presented as aside-by-side
figure/ table.

94% of 468
respondents rated
the information in
the aid aspresented in a“balanced way.”Chapter I: Balancing the Presentation of Information and Options

2. The Impact of Using Side-by-Side Tables to Contrast the Options
For each of these 10 papers, we also examined the papers—or their corresponding decision aids,
if available—for the presence of tables contrasting the options. (Authors were contacted if adecision aid could not be found; two authors did not respond.)
Two general categories of tables were discerned; see Table 3, columns 4 and 5.
“Evidence tables” were defined as presenting probabilistic information on the pros andcons of options in a table. Such tables contain n columns with the options times m
medical outcomes for the pros and cons, the n*m cells containing frequency ofoccurrence (e.g., “x out of 100 had the outcome”, either with or without a visual aid todepict x out of 100) in the cells. Empty cells, to denote lack of risk information, would
also be considered as valid cells. An example can be found in van Tol-Geerdink, 2006,
Figure 1.
“Any table” was defined as either a) the presence of an evidence table, as defined above,or b) the presence of any other table contrasting the options—for example, when cells
contained arguments.
Thus, we have separate “samples” of studies—one sample of studies that evaluated decision aidsthat incorporated a table, and another sample of studies that evaluated decision aids that did notincorporate a table.
These samples were compared—using a random effects model to take into account heterogeneity
across studies—in terms of the percentages of patients who agreed that the relevant decision aid
was balanced. We used univariate ANOVA, which used weighted least squares, and again
weighted by the number of patients in the samples. With this conservative method of weighting,the analysis was based on the number of studies in a “sample”, and not on the number of patients
included. All analyses were performed with SPSS (version 18.0).
The results are depicted in Figure 1.
The results show that decision aids with “any table” received the highest ratings as beingbalanced (F (2,7) = 21.18, p = 0.001). Thus, the inclusion of a summary table of any kind inwhich the options are compared was associated with more subjects (ranging from 70% to 96%)
judging the information as balanced.
The results also show that the inclusion of a specific “evidence table”, in which the options werecompared using percentages, was not associated with patients being more or less likely to rate an
aid as balanced (F (2,7) = 2.77, p = 0.130). Evidence tables were consistently rated as balancedby more than 70% of the respondents (see Table 3).

19

Chapter I: Balancing the Presentation of Information and Options

Support for the effectiveness of tables regarding gist and verbatim understanding of probabilities
information, when compared to other formats, has been reported by several researchers (Tait etal., 2010; Hawley et al., 2008).

Figure 1. Percent of Subjects Rating a Decision Aid as Balanced, Stratified by Use of aSide-by-Side Table Contrasting the Optionsb)

Changes from the Original Evidence Base

The original evidence review for this chapter identified 97.7% of articles in the 2003 review ofdecision aid studies as presenting information about potential harms and well as potential
benefits. Far fewer -- only 8% -- assessed the degree of balance in the aid from the user’s
perspective.
c)

Emerging Issues/Research Areas in Evidence Base

There is a need to develop a consensus on the definition of “balance” and on the methods
used to assess balance.



There is a need to carry out a range of comparative studies:o We should investigate whether different approaches to assessing balance lead todifferent evaluations of a decision aid. For example, asking patients if a decision
aid is biased may lead to different responses than asking patients if they feel theinformation was presented fairly.

20Chapter I: Balancing the Presentation of Information and Optionso We should compare different ways to improve the presentation of balanced
information (e.g., using side-by-side tables).
o We should compare the effects on balance ratings of various side-by-side tables inpatients’ decision aids, using human factors studies.
The relatively good performance of evidence tables supports the use of traditional decision
analytic reasoning using outcomes and their probabilities (expected utility) as a basis of
supporting decision making in patients.

21

Chapter I: Balancing the Presentation of Information and Options

REFERENCES
Anderson, C., J. Carter, et al. (2011). ""The booklet helped me not to panic": A pilot of adecision aid for asymptomatic women with ovarian cancer and with rising CA-125
levels." International Journal of Gynecological Cancer 21(4): 737-743.
Baron, J. (2000). Thinking and deciding (3rd ed.). Cambridge: Cambridge University Press.
Bekker, H., Thornton, J., Airey, C., Connelly, J., Hewison, J., Robinson, M., et al. (1999).
Informed decision making: an annotated bibliography and systematic review. HealthTechnology Assessment, 3(1), 1-156.
Bohmer RM, S. K. (2003). "Shared deciison-making (N9-604-001)." Boston: Harvard Business
School.
Broyles, S., C. Sharp, et al. (1992). "How should parents be informed about major procedures?
An exploratory trial in the neonatal period." Early Hum Dev 31(1): 67-75.
Chaiken, S. (1980). "Heuristic versus systematic information processing and the use of source
versus message cues in persuasion." Journal of Personality and Social Psychology 38:
752-766.
Christensen-Szalanski JJ, B. W., Harrel H, Gardener MM (1997). "Circumcision and informed
consent. Is more informtion always better? ." Medical Care 25(9): 856-867.
Drake, E. R., L. Engler-Todd, et al. (1999). "Development and evaluation of a decision aid about
prenatal testing for women of advanced maternal age." Journal of Genetic Counseling8(4): 217-233.
Elwyn, G., A. O'Connor, et al. (2006). "Developing a quality criteria framework for patientdecision aids: online international Delphi consensus process." British Medical Journal
333(7565): 417-419.
Elwyn, G., A. M. O'Connor, et al. (2009). "Assessing the quality of decision support
technologies using the International Patient Decision Aid Standards instrument(IPDASi)." PLoS ONE [Electronic Resource] 4(3): e4705.
Evans, R., G. Elwyn, et al. (2007). "Toward a model for field-testing patient decision-support
technologies: a qualitative field-testing study." Journal of Medical Internet Research 9(3):e21.
Feldman-Stewart, D., S. Brennenstuhl, et al. (2007). "A systematic review of information indecision aids." Health Expectations 10(1): 46-61.
Griffith, J. M., M. Fichter, et al. (2008). "Should a colon cancer screening decision aid include
the option of no testing? A comparative trial of two decision aids." BMC Medical
Informatics & Decision Making 8: 10.
Hawley, S. T., B. Zikmund-Fisher, P. Ubel, A. Jancovic, T. Lucas, A. Fagerlin. (2008). “The
impact of the format of graphical presentation on health-related knowledge and treatment
choices. Patient Education and Counseling 73(3): 448-455.
Inglis, S. and D. Farnill (1993). "The effects of providing preoperative statistical anaesthetic-risk
information." Anaesth Intensive Care 21(6): 799-805.
Janis, I. L. and Mann, L. (1977). Decision making: a psychological analysis of conflict, choice,and commitment. London: Free Press; Collier Macmillan.
Jorgensen, K. J. and P. C. Gotzsche (2004). "Presentation on websites of possible benefits andharms from screening for breast cancer: cross sectional study." BMJ 328(7432): 148.

22

Chapter I: Balancing the Presentation of Information and Options

Lalonde, L., A. M. O'Connor, et al. (2004). "Development and preliminary testing of a patientdecision aid to assist pharmaceutical care in the prevention of cardiovascular disease."
Pharmacotherapy 24(7): 909-922.
Martin, R. W., M. E. Brower, et al. (2011). "An experimental evaluation of patient decision aid
design to communicate the effects of medications on the rate of progression of structural
joint damage in rheumatoid arthritis." Patient Education & Counseling.
Mathieu, E., A. L. Barratt, et al. (2010). "Helping women make choices about mammography
screening: an online randomized trial of a decision aid for 40-year-old women." Patient
Education & Counseling 81(1): 63-72.
Michie, S., D. Smith, et al. (1999). "Prenatal tests: how are women deciding?" Prenat Diagn
19(8): 743-748.
O'Connor, A. M., D. Stacey, et al. (2003). "Decision aids for people facing health treatment orscreening decisions." Cochrane Database Syst Rev(2): CD001431.
Payne, J. & Bettman, J. (2004). Walking with the scarecrow: The information-processing
approach to decision research. In D. Koehler and N. Harvey (Eds.) Blackwell Handbookof Judgment and Decision Making. pp.110-132, Malden MA, Blackwell Publishing.
Phatouros, C. C. and M. P. Blake (1995). "How much now to tell? Patients' attitudes to an
information sheet prior to angiography and angioplasty." Australas Radiol 39(2): 135139.
Raffle, A. E. (1997). "Informed participation in screening is essential." BMJ 314(7096): 17621763.
Raffle, A. E. (2000). "Honesty about new screening programmes is best policy." BMJ
320(7238): 872.
Raffle, A. E. (2001). "Information about screening - is it to achieve high uptake or to ensure
informed choice?" Health Expect 4(2): 92-98.
Roberts, C. L., C. H. Raynes-Greenow, et al. (2004). "Protocol for a randomised controlled trialof a decision aid for the management of pain in labour and childbirth[ISRCTN52287533]." BMC Pregnancy and Childbirth 4(09).
Smith, S. K., L. Trevena, et al. (2010). "A decision aid to support informed choices about bowel
cancer screening among adults with low education: randomised controlled trial." British
Medical Journal 341.
Spunt, B. S., R. A. Deyo, et al. (1996). "An interactive videodisc program for low back pain
patients." Health Education Research 11(4): 535-541.
Tait, A. R., T. Voepel-Lewis, B. J. Zikmund-Fisher, A. Fagerlin. (2010). “Presenting researchrisks and benefits to patients: does format matter?” Anesthesia and Analgesia 111(3):718-723.
Ubel, P. A., D. M. Smith, et al. (2010). "Testing whether decision aids introduce cognitive
biases: results of a randomized trial." Patient Education & Counseling 80(2): 158-163.
van Tol-Geerdink, J. J., P. F. Stalmeier, et al. (2006). "Do prostate cancer patients want to choose
their own radiation treatment?" Int J Radiat Oncol Biol Phys 66(4): 1105-1111.
van Tol-Geerdink JJ, Leer JW, Wijburg C, van Oort IM, Vergunst H, van Lin EJNT, Witjes JA,
Stalmeier PFM. Patient participation in the treatment choice does not induce regret: RCTof a decision aid on the treatment choice for prostate cancer. (submitted).
Watson, E., P. Hewitson, et al. (2006). "Informed decision making and prostate specific antigen(PSA) testing for prostate cancer: A randomised controlled trial exploring the impact of a23

Chapter I: Balancing the Presentation of Information and Options

brief patient decision aid on men's knowledge, attitudes and intention to be tested."
Patient Education and Counseling 63(3 SPEC. ISS): 367-379.
Wills, C. E. and M. Holmes-Rovner (2003). "Patient comprehension of information for sharedtreatment decision making: State of the art and future directions." Patient Education andCounseling 50(3): 285-290.
Wilt, T. J., M. K. Brawer, et al. (2012). Radical prostatectomy versus observation for localized
prostate cancer. New England Journal of Medicine 367(3), 203-213.
Winterbottom, A., H. L. Bekker, et al. (2008). "Does narrative information bias individual's
decision making? A systematic review." Social Science and Medicine 67(12): 2079-2088.
Zapka, J. G., B. M. Geller, et al. (2006). "Print information to inform decisions about
mammography screening participation in 16 countries with population-based programs."
Patient Education & Counseling 63(1-2): 126-137.
Zikmund-Fisher, B. J., P. A. Ubel, et al. (2008). "Communicating side effect risks in a tamoxifen
prophylaxis decision aid: the debiasing influence of pictographs." Patient Education &Counseling 73(2): 209-214.

24

Chapter I: Balancing the Presentation of Information and Options

APPENDIX:
ORIGINAL CHAPTER I

Original Authors
Nora Moumjid(lead)

La Fédération Nationale des Centres de Lutte Contre leCancer, Centre Léon Bérard, Lyon

FR

Dawn Stacey

University of Ottawa

CAAngela Raffle

Bristol North Primary Care Trust

UK

Elissa Ozanne

Massachussetts General Hospital Institute for Technology
Assessment

USA

Original Rationale/Theory
The goal in patient decision making is to enable the patient to make an informed autonomous
decision that reflects their personal preferences. To this end, patient decision aids provide
patients with information about options and their consequences (benefits/harms) to help themclarify personal preferences. However, the of an autonomous decision also implies that thepresentation of information should not favor a specific option (Hope, 1996). There is empiricalevidence that variations in the presentation of information affects how health is perceived, andhow therapeutic choices are made and acted upon (Herrin, 2001; Jorgensen & Gotzsche, 2004).
For example, depending on the framing of the data (e.g. using mortality or survival rates),patients make different treatment choices (Bohmer RM 2003). Furthermore, the way in which
information is presented influences patients’ satisfaction, knowledge, understanding,participation in decision-making, continuance of chosen options, coping with their situation, andsearch for further information (Broyles, Sharp et al. 1992; Inglis and Farnill 1993; Phatouros andBlake 1995; Christensen-Szalanski JJ 1997; Michie, Smith et al. 1999)
When unbalanced, information can create therapeutic expectations that are impossible to meet,and can lead patients to unwittingly undertake interventions that carry chances of harms that theywould not willingly accept. Since it is not only dishonest but unethical to create unrealistic
expectations or to obscure the chances of harm (Raffle 1997; Raffle 2000; Raffle 2001), patientdecision aids must aim to present information in a balanced manner that does not inadvertently
persuade the user to accept or reject a particular option.
Original Evidence
Inventory of Available Patient Decision Aids
Balanced presentation of information was assessed in patient decision aids registered in the
Cochrane Review inventory (O'Connor, Stacey et al. 2003). Of 131 patient decision aids thatwere available and updated within the last 5 years:

25

Chapter I: Balancing the Presentation of Information and Options

97.7% (of 131) presented potential harms as well as potential benefits;
8.0 % (of 131) measured the degree of balanced presentation of benefits and harms fromthe user perspective; of these, the majority of patients found the patient decision aidbalanced;

RCTs Involving Patients Facing Actual Choices
Of the 29 individual patient decision aids, evaluated in 34 RCTs included in the Cochrane
Review, 19 were available for review of content (O'Connor, Stacey et al. 2003). Of these: All 19 (100%) presented potential harms as well as potential benefits; 4 (21%) measured the degree to which patients thought the presentation of benefits andharms was balanced. Three of these four reported that more than 2/3 of patients found theinformation balanced (see table 10.1). All four studies used a scale that was similar to thescale first reported by Barry and colleagues (1995).
Other Evaluative Studies
In 1995, Barry and colleagues asked men to indicate whether the information in a patientdecision aid about the treatment of benign prostatic hyperplasia was slanted toward surgery,balanced, or slanted toward watchful waiting. Ratings were obtained on a five-point scale. As
reported in table 10.1, 74% thought the patient decision aid was completely balanced. Of those
who thought it was slanted, most indicated that it was slanted in the same direction to which they
were leaning, which raises questions about the ability to accurately measure patients’ perspectiveof information balance.
Barry et al.’s acceptability tool was also used in developing breast screening patient decision aids
for women in out-of-target age groups (women 40 to 49 and women 70 and older) (O'Connor,
Stacey et al. 2003; Jorgensen and Gotzsche 2004). Women within the target age group as well aspractitioners affiliated with breast screening programs reviewed the patient decision aids. Abouthalf of the women found the patient decision aids slanted in favour of starting screening (40 to49) or continuing screening (70 and older), while the others found them balanced. In contrast,
several practitioners thought the patient decision aids were slanted against screening. These
conflicting observations reinforce the uncertainty about whose perspective “counts” whenassessing information balance and the challenges in obtaining an objective measure of balance.
(Jorgensen and Gotzsche 2004) conducted a cross sectional study of mammographic screening
information presented by major interest groups on 27 Scandinavian and English websites todetermine if there were balanced accounts of screening’s possible benefits and harm. They foundthat most websites omitted information about important harms and emphasised benefits in a waythat would be expected to increase uptake of screening. For example, 12 sites mentioned thelifetime risk of developing breast cancer, usually followed by the annual number of diagnoses. In
contrast, only three sites mentioned that women have a more than 50% chance of surviving
breast cancer and only four stated that the lifetime risk of dying from breast cancer is about 34%.

26

Chapter I: Balancing the Presentation of Information and Options

Slightlyslanted to no
favourClearlyslanted to
NOT favour
invasiveintervention

N = 373;
prospective
cohort study

1%

7%

74%

14%

4%

N = 81;
within RCT

NotreportedNotreported76%

Notreported

Not reported

N = 41;
within RCT

NotreportedNotreported60%

Notreported

Not reported

N = 80;within RCT

6%

10%

79%

4%

1%

Evaluation

Barry et al.,1995 BPH
treatment
O’Connor etal., 1998;
HRT
Phelan et al.,
2001; Backsurgery
Volk et al.,
1999; PSA
testing

Clearlyslanted tofavour mostinvasiveintervention
Slightlyslanted tofavour mostintensive

Completely
Balanced

Original Table: Results of Evaluations of Balanced Presentation of Information Presented
in Patient Decision Aids

27

Chapter I: Balancing the Presentation of Information and Options

Original Appendix 1: Measuring Balanced Presentationa) When measuring the degree of balance in the presentation of options and consequences(benefits, harms), the users’ (patients, practitioners) personal predisposition towards anoption be elicited at baseline.
b) For only two options:
A single question can be used to ask users (patients/practitioners) to rate whether thedecision aid is slanted from strongly favouring option A through completely balanced tostrongly favouring option B. For example:
How balanced and fair did you find the information presented in the decision aid (pleasecheck one)?
 Clearly slanted to option A Slightly slanted to option A
 Completely balanced
 Slightly slanted to option B
 Clearly slanted to option Bc) For three or more options, there are two approaches that could be used to measure balance.
a. For each option presented, ask users to rate whether the decision aid is strongly in favourof that one specific option through balanced to strongly in favour of the other options. For
example:How balanced and fair did you find the information presented in the decision aid (pleasecheck one)?
 Clearly slanted to option A Slightly slanted to option A
 Completely balanced
 Slightly slanted to the other options
 Clearly slanted to the other options
b. Ask users to respond to a single question as an indication of biasing the user in one
direction. For example:
Did the program present one option as the best overall choice?
 Yes
 No
Original Appendix 2: Interpreting the Results of Balancea) Calculate the percentage of users who rate it as completely balanced.
b) Check the distribution of options that were identified as not balanced. If the users areroughly equally scattered, this implies that the patient decision aid offers a balanced
presentation. If there is agreement that the patient decision aid is slanted either
consistently toward or consistently against an option, it is likely that the presentation of
information needs to be revised. However, before making revisions, it is important toconsider users baseline choice predisposition. Previous evaluation has found that users
who already have a preferred option in advance of seeing a patient decision aid are more

28

Chapter I: Balancing the Presentation of Information and Options

likely to rate it as “slanted” either in the same direction or away from their own
preferences. They may have found the arguments that support their views to be morecompelling or they may not have wanted to be made aware of or reminded of facts thatare counter to their choice.
Original References
Barry J, Fowler FJ, Mulley AG, Henderson JV, Wennberg JE. Patient reactions to a program designed tofacilitate patient participate in treatment decision for benign prostatic hyperplasia. Medical Care 1995;33:
771-782.
Bohmer RM, Sepucha K. Shared decision-making (N9-604-001). Boston: Harvard Business School,
2003.
Broyles S, Sharp C, Tyson J, Sadler J. How should parents be informed about major procedures? An
exploratory trial in the neonatal period. Early Hum Dev, 1992 ; 31(1) :67-75.
Christensen-Szalanski JJ, Boyce WT, Harrel H, Gardner MM. Circumcision and informed consent. Is
more information always better? Medical Care, 1997; 25(9):856-67.
EthicAd. DTC Regulations, FDA Regulations. Available:www.ethicad.org/health/dtc/fda.html
Herrin J. Interventions for improving the presentation of empirical evidence about health. Cochrane
Review, 2001.
Inglis S, Farnill D. The effects of providing preoperative statistical anaesthetic-risk information. Anaesth
Intensive Care. 1993; 21(6):799-805.
Jorgensen KJ, Gotzsche PC. Presentation on websites of possible benefits and harms from screening forbreast cancer: cross sectional study. BMJ, 2004;328:148.
Michie S, Smith D, Marteau TM. Prenatal tests: how are women deciding? Prenat Diagn, 1999; 19(8):743-8.
O'Connor AM, RostomA, Fise V, Tetroe J, Entwistle V, Llewellyn-Thomas H, Holmes-Rovner M, Barry
M, Jones J. Decision aids for patients facing health treatment or screening decisions: systematic review.
BMJ. 1999.
Phatouros CC, Blake MP. How much now to tell? Patients' attitudes to an information sheet prior toangiography and angioplasty. Australas Radiol. 1995; 39(2):135-9.
O’Connor AM, Stacey D, Barratt A, Mai V. Decision aids for women, in out-of-target age groups,
considering breast cancer screening mammography. Paper presented at the Reasons for Hope 2003: newdevelopments in breast cancer research 3rd scientific conference sponsored by the Canadian Breast
Cancer Research Initiative, Ottawa, October 2003.
O'Connor, A.M., Stacey, D., Entwistle, V., Llewellyn-Thomas, H., Rovner, D., Holmes-Rovner, M., Tait,
V., Tetroe, J., Fiset, V., Barry, M., Jones, J. Decision aids for people facing health treatment or screening
decisions [Cochrane Review]. In: The Cochrane Library, 2003: Issue 2. Oxford: Update Software.

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Chapter I: Balancing the Presentation of Information and Options

O’Connor AM, Tugwell P, Wells GA, Elmslie T, Jollly E, et al. Randomized trial of a portable selfadministered decision aid for postmenopausal women considering long-term preventive hormone therapy.
Medical Decision Making, 1998; 18: 295-303.
Phelan EA, Deyo RA, Cherkin DC, Weinstein JN, Ciol MA, Kreuter W, Howe JF. Helping patientsdecide about back surgery. A randomized trial of an interactive video program. Spine, 2001; 26(2): 206212.
Raffle AE. Informed participation in screening is essential. BMJ, 1997; 314:1762-3.
Raffle AE. Honesty about new screening programmes is best policy. BMJ, 2000;320:872.
Raffle AE. Information about screening : is it to achieve high uptake or to ensure informed choice? Health
Expectations, 2001; 4(2) : 92-8.
Thornton H, Edwards A, Baum M. Women need better information about routine mammography. BMJ,
2003;327:101-3.
Volk RJ, Cass AR, Spann SJ. A randomized controlled trial of shared decision making for prostate cancer
screening. Archives Fam Med, 1999: 8, 333-340.

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