Screening for cardiovascular risk: public health imperative or matter for
individual informed choice?
Theresa M Marteau, professor of health psychologya, Ann Louise Kinmonth,
professor of general practiceb.
a Psychology and Genetics Research Group, King's College London,
London SE1 9RT, b GP and Primary Care Research Unit, University of
Cambridge, Institute of Public Health, Cambridge CB2 2SR
The National Screening Committee has recommended a paradigm of informed
choice for participants in all screening programmes.Theresa Marteau
and Ann Louise Kinmonth examine the potentialconsequences of
applying such a policy to screening for risk ofcoronary heart
disease in primary care
Current recommendations for the primary prevention of coronary heart disease
in groups at high risk depend on screening throughprimary care and
provision of risk related advice or treatment.1Criticisms of these recommendations highlight the lack of evidencefor the cost effectiveness of multiple risk factor interventionsdelivered through primary care. 23 We propose that this lackof
effectiveness may, in part, reflect how people are invitedfor
screening. The public health approach most often used focuseson
maximising participation in screening rather than on informed
participation. We consider here the implications of offering primary
preventive services for cardiovascular disease within a frameworkof
informed choice.
Summary points
Invitations for cardiovascular screening tend to emphasise the benefits
of participation, neglecting the possible harms and uncertainties that
such screening entails
A policy shift is occurring towards ensuring that people invited to
participate in any screening programme do so on the basis of an informed
choice
The impact of conducting cardiovascular screening within an informed
choice paradigm is unknown
Presenting the uncertainties associated with the assessment and
reduction of cardiovascular risk has the potential to be more cost
effective than screening conducted in a traditional, public health
paradigm if it results in participants who are more motivated to reduce
their risks
It also has the potential to increase inequalities by reducing the
number of people most at risk who participate in screening
Evaluation of the operation of an informed choice approach to
cardiovascular risk assessment is needed
We searched Medline and PsycINFO databases for systematic literature reviews
relating to informed choice and screening, bothin general and in
relation to cardiovascular disease. We alsodrew on personal
literature collections, stemming from joint longterm interests in
risk perception and screening for cardiovascularand other
risks.
A screening procedure is one that is applied to a population to select people
at risk of an unfavourable health outcome forfurther investigation,
monitoring, or advice and treatment. Atraditional public health
approach to screening regards the populationbenefits of reduced
morbidity and mortality as inherent, not tobe appraised by
individuals before they decide whether or notto participate. In
keeping with this, the information accompanyingthe invitation tends
to be brief, emphasising the general healthbenefits of
participation.
A policy shift is occurring in the United Kingdom and elsewhere towards
informed choice, as laid out by the National ScreeningCommittee:
"There is a responsibility to ensure that those whoaccept an
invitation (to screening) do so on the basis of informedchoice, and
appreciate that in accepting an invitation or participatingin a
programme to reduce their risk of a disease there is a riskof an
adverse outcome".4 This approach recognises the
factthat although screening programmes may benefit populations, notall participants will benefit and some will even be harmed by
participation.
Good examples of an informed choice approach to screening are mainly to be
found in situations where the penalty of uninformedscreening is seen
as unacceptably high. When termination of pregnancyis a possible
outcome of antenatal screening, for example, a policyof informed
choice is seen as central to individual autonomy andto avoiding
eugenic practice.5 Authors concerned about theadverse psychological effects of unrealistic expectations of whatcancer screening programmes can deliver have emphasised the importanceof informed choice. 67
This position is reinforced by increasinglitigation associated with
the provision of poor quality informationto people participating in
cancer and prenatal screening programmes.8
Screening for risk of coronary heart disease can be said to differ
fundamentally from screening for existing disorders suchas Down's
syndrome or breast cancer. In the first case screeningis based on
the probability of a future event, and cardiovascularrisk is
continuously distributed in the population; in the secondcase a
screening test, of defined precision, splits the populationinto
people likely or unlikely to have an existing condition,and this is
then confirmed or excluded by a diagnostic test. Although
cardiovascular risk may be continuous, however, judgments on howto
manage it are binary. Individual risk status is usually confirmedby
duplication of measurement of risk factors such as blood pressure,
lipids, and glucose. At specified levels of risk, treatment is
offered to individuals in an attempt to avert possible adversefutureevents.
Screening for cardiovascular risk in primary care has also been approached
through "case finding." For example, a patientmay be identified as
having hypertension while consulting abouta skin infection. However,
qualitative evidence has shown thatpatients would like choice in
this situation and vary as to whetherthey are ready for the
associated lifestyle advice.9
Categorising individuals as belonging to high risk groups is associated with
the adverse effects resulting from labelling.For example,
identification of diabetes, hypertension, or hyperlipidaemiacreates
demands for clinical monitoring and adherence to drugtreatment,
potentially resulting in a life lived in fear of aheart attack or
stroke. Many people do not want to pay these pricesfor an uncertain
reduction in personal risk.10 However, littleor no debate has taken place about the consequences of shifting
the focus of screening for specified thresholds of cardiovascular
risk from one guided by a population based public health paradigmto
one guided by individual informedchoice.
An emerging consensus states that an informed choice or decision has two core
characteristics: firstly, it is based on relevant,good quality
information; and, secondly, the resulting choicereflects the
decision maker's values. This can be viewed in practiceas a choice
based on relevant knowledge, reflecting an individual'svalue system,
and behaviourally implemented.11 The General
MedicalCouncil has produced guidance on the information that should
beprovided to people offered screening.12
This includes informationon the condition for which screening is
being offered, as wellas information on the likelihood, meaning, and
implications ofall possible test results. Such guidelines do not,
however, tellus how much information should be provided or how it
should bepresented in order to facilitate choices that are informed.
(Credit: PNS/REX)
Screening programmes may benefit
populations, but only a few individuals will benefit and some may even
be harmed by participation
The national service framework for coronary heart disease and the joint
British recommendations on prevention of coronaryheart disease
propose that all patients with a 10 year absoluterisk of a coronary
event (non-fatal myocardial infarction or deathfrom coronary heart
disease) of over 30% should "be targeted andtreated." 113 People meeting or exceeding
this threshold maybe viewed as "screen positive." If such patients
take effectivedrugs for hypercholesterolaemia and high blood
pressure they can,as a group, reduce this risk by about 30% over
10 years (estimatedfrom studies over five years). 1415 This might reduce a 10year
risk of 30% to one of 21%. Thus a patient identified as beingat high
risk by the screening criteria in the national serviceframework has
about a 9% chance of benefiting (and a 91% chanceof not benefiting)
from 10 years of treatment. To put this anotherway, 11 patients at
high risk must be treated for 10 years toavoid a coronary event in
one ofthem.
How will individual patients respond to different representations of their
predicament? The information could be presentedin general termsfor
example, "this treatment will reduce yourrisk"or
more specifically in terms of reductions in relativeor absolute risk
or in terms of the number of patients who needto be treated for one
person to gain. The consequences of treatmentcan also be expressed
in terms of the number of people who willbe inadvertently harmed.
Each of these different ways of presentingsimilar information can
affect choices in other contexts,16but
we do not know how different combinations affect choices about
participation in screening for risk of coronary heart diseaseor
about subsequent treatment and changes inbehaviour.
What might be the consequences of
achieving informed choice?
Uptake
Educational interventions aimed at increasinguptake of screening
seem to have, at most, only small effectson uptake.17
However, the content of these interventions wasprobably more
positive than negative, given that such interventionsare generally
aimed at increasing uptake rather than promotinginformed choice.
Evaluations of some information systems aimedat helping men to make
informed choices about screening for prostatecancer show a decreased
uptake in screening after provision ofinformation about the
uncertain and adverse effects of such screening.18This, however, is for a screening test that is a weak predictor
of a condition for which treatment is of unknown benefit. It maynot
hold for cardiovascular disease, for which the impact of preventive
drugs on risk reduction is well documented and may be judged aslarge
in the groups at highestrisk.
Emotional impact of screening
Participating in screening after having madean informed choice to do
so is likely to be associated with morerealistic expectations of
screening, with corresponding lowerlevels of emotional distress and
false reassurance. Interventionsthat increase understanding about a
screening test and subsequentinterventions lead to lower levels of
emotional distress amongpeople learning of increased risks of
disease and lower levelsof false reassurance in people receiving a
negative result orone indicating a low risk. 1920
Motivation to change behaviour
Change in behaviour after participation incardiovascular screening
programmes designed to reduce the riskof coronary heart disease has
been disappointing.21 Change in
behaviour is most likely in people who are motivated to make such
changes.22 Ensuring that people accepting an
invitation forscreening do so on the basis of relevant information
may leadto the motivation to make changes to reduce any risks
identifiedbeing higher than has been observed hitherto, resulting in
largereffects onhealth.
Impact on equity and population health
A policy of informed choice might inadvertentlyfoster inequities in
two ways. Firstly, a detailed invitationto participate in screening
may lead to high levels of fear inpeople aware of their increased
risk, an emotional state thatcan lead to avoidance behaviour,
including not attending for screening.23Secondly, a detailed invitation to participate in screening may
be less accessible to people with low literacy skills, who mayalso
be at high risk of heart disease. Development of materialsthat do
not induce very high levels of fear and are comprehensibleto most of
the population may go some way towards minimising thesepotential
sources ofinequity.
The net effect of any population based preventive strategy depends on the
number of people participating, their baseline levelsof risk, and
the changes in risk achieved by their actions aftertesting. Although
a policy of informed choice may reduce the likelihoodof the public
health objectives of screening being achieved, itmay also increase
the effectiveness of interventions among peoplewho choose to
participate and may prove at least as cost effectiveas current
efforts. If people are unmotivated to achieve the gainsthat risk
assessment and subsequent intervention can result in,this would be
another instance of informed patients behaving inways that are at
odds with prevailing medical opinion, an increasinglyrecognised
consequence of patient centred care.24 Whatever
thepopulation outcomes, a policy of informed choice could place
primarycare back in partnership with patients seeking help to changetheir behaviour, as opposed to being faced with a responsibilityfor improving the health of the public, regardless of the motivationof individual patients. Studies are now needed to evaluate the
impact of a policy of informed choice on reducing cardiovascularrisk
in high risk populations identified byscreening.
Acknowledgments
We thank Kay Tee Khaw, Simon Griffin, Jon Emery, David French, Susan Michie,
and David Armstrong for discussions of earlierdrafts of this paper
and Nadine Bowen for itspreparation.
Footnotes
Editorial by Brindle and Fahey
Funding: TMM is funded by the Wellcome Trust. ALK is supported by NHS
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