Transcript Ceri Phelps.ppsx - Health in Wales

Genetic risk, motivation
and behaviour
Dr Ceri Phelps, CPsychol, Csci, AFBPsS
Registered Health Psychologist
Genetic risk, motivation and
behaviour
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GENETICS
Public health genomics:
a (brief) psychological perspective
• What understanding do the general population hold
towards genetics and genetic testing?
• How do the attitudes of the general population influence
behavioural choices and interest in genetics?
• What are the implications for people’s decisions and
behaviours in relation to lifestyle choices?
• How best do we intervene to influence behaviours and
choices at a public health level?
What do we know about genetic
risk, motivation and behaviour….?
And how can this be applied to
public health?
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• General public generally positive about medical
genomics research (Critchley et a., 2014)
• General public often misinterpreted hypothetical
genetic test results (Leighton et al., 2010)
– Thought they were more “helpful” than they actually are..
• Issue of how accurate these beliefs are/how wellinformed general public are is paramount…
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• What influences the choices people make about
their healthy behaviour?
– attitudes & beliefs
– comprehension/understanding of risk
– emotional responses to genetic risk
– how genetic information is delivered
– distress and worry
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Attitudes influence health
behaviours.
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• Greater interest in genetic testing linked to:
• Greater interest in genetic testing in general population linked
to:
– more positive attitudes towards testing
– positive beliefs about the potential outcomes such as access
to early diagnosis and treatment (e.g. Facio et al. 2013).
BUT
• Concerns about the confidentiality of genetic test results
• Concerns about stigma and discrimination (e.g., Shaw & Bassi,
2001)
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Predicting interest in genetic testing…
Theory of Planned Behaviour
Predicting interest in genetic testing…
Public health interventions?
• Education
• Awareness raising
• Attitude change
Theory of Planned Behaviour
The intention-behaviour gap
• Intentions do not always predict behaviour
• Implementation Intentions (Gollwitzer, 1993)
– People are more likely to engage in an intended behaviour
if they identify specific plans to enact that behaviour
(where/when/how)
– e.g., Orbell et al. (1997) women encouraged to identify a
plan to conduct BSE were more likely to later report having
performed BSE.
But……
• Social cognition models assume we are always rational
decision-makers
• Does the general population always deliberately and
consciously weigh up the “pros” and “cons” of a given
behaviour?
– What about behavioural choices that have become routine or
automatic?
– How easy it is change attitudes/beliefs underpinning such
behaviours?
• Are our attitudes and beliefs about e.g., social norms
fixed and stable?
– May explain variability in predictive value of models
People are not always rational decision
makers
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Understanding impact of genetic risk information
• Objective versus Subjective Risk
• Objective risk alone does not always predict
subsequent health behaviours
• Subjective beliefs about risk more important
– Role of psychological distress and risk
comprehension
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Self-regulation model (Leventhal et al., 1992)
– People are “common-sense scientists” or active
information processors.
– When faced with a threat to our health, we form a
cognitive and emotional response based upon our beliefs
about:
•
•
•
•
•
Identity (label, signs & symptoms)
Causes (genetic, psychological, environmental)
Consequences (e.g., emotional, financial, physical)
Timeline (acute, chronic, cyclical)
Curability/controllability
Illness Perceptions Questionnairerevised (Moss-Morris et al., 2002)
• Measures the five IRs identified by Leventhal
et al.
• Also includes:
– emotional representations,
– illness coherence,
– beliefs about personal control.
Leventhal’s Self Regulation Model
• Influence preventive behaviour and coping responses:
– Seeking medical help (over or under-use)
– Adherence to treatment (e.g., screening, medication)
– Emotional reactions to symptoms (e.g., avoidance,
hypervigilance)
– Engagement in self-care behaviour (e.g., BSE, healthy
lifestyle)
Research into Illness Perceptions
• Fielding (1987)
– Asked patients to identify factors that they
believed had contributed to their MI
– Most common factors were stress and worry!
– Factors such as smoking or high cholesterol (i.e.,
medically proven contributors) were not highly
endorsed!
– Do people like to attribute causes of their illness to
short-term, changeable, external factors?
Heijmans (1998):
• Individuals with CFS who believed their illness
to be serious, to have little control over it and
saw little possibility of cure reported greater
mental health difficulties and less vitality than
those with the opposite beliefs.
Petrie et al. (1996):
• Cardiac patients were more likely to attend a cardiac
rehabilitation course if they held strong beliefs that
their condition could be controlled or cured.
• More likely to return to work within 6 weeks if
believed only short-term and minimal negative
consequences.
• Beliefs about serious consequences associated with
later disability and limited activity
Leventhal’s Self Regulation Model
• Suggests poorer psychological outcomes in those who
believe that:
 being at genetic risk/having a genetic condition has serious
emotional, physical or financial consequences
 little they can do to control their risk/illness
 little belief in efficacy of treatment, screening or surgery
 do not understand the genetic risks of that disease
• Personal experience with a genetic disease is a major
determinant of its representation and subsequent
decisions (Shiloh, 1996)
Leventhal’s Self Regulation Model
• Illness representations acquired through:
– Media
– Personal experience
– Family & Friends
• May be inaccurate!
• Can be changed!
Leventhal’s Self Regulation Model
• Illness representations acquired through:
– Media
– Personal experience
– Personal experience with a genetic disease is a major determinant of
its representation and subsequent decisions (Shiloh, 1996)
– Family & Friends
• May be inaccurate!
Leventhal’s Self Regulation Model
• Illness representations acquired through:
– Media
“I find it hard to understand
– Personal
that ifexperience
so many people in my
– Personal experience with a genetic disease is a major determinant of
family have had breast cancer
its representation and subsequent decisions (Shiloh, 1996)
that &they
– Family
Friendsfelt I was not at risk. I
keep thinking ‘what if they got it
wrong!?’
• May
be inaccurate!
Average risk patient
Hilgart, J., Phelps, C., Bennett, P., Hood, K., Brain, K & Murray A (2010). “I have always believed
I was at high risk...” The role of expectation in emotional responses to the receipt of an average,
moderate or high genetic risk assessment result: A thematic analysis of free-text questionnaire
comments. Familial Cancer
What you say (or how you say it)
matters.
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Hutchings, Fitzgerald & Phelps (2013)
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Post-risk ANOVA: Illness perceptions by risk group
Illness Perceptions
at Time 3
Average
n=31
Moderate
n=53
High
n=36
Mean (SD)
Mean (SD)
Mean (SD)
Consequences
16.30 (5.00)
16.42 (4.36)
17.96 (4.76)
Personal control
18.83 (2.97)
17.60 (3.31)
18.21 (3.38)
Treatment control
13.89 (3.09)
14.27 (2.36)
14.70 (2.96)
Illness coherence
9.60 (2.96)
10.71 (2.56)
11.77 (2.30)
Significant effect for risk group on Illness Coherence
F(2,100) = 4.5 p=0.01
Those at high risk reported significantly greater
understanding of this risk than those at average risk
(p<0.01)
Helping people to manage their
worries is important
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High levels of psychological distress:• Affect comprehension of risk information
(Kent et al., 2000; Meiser et al., 2001a)
• Reduce adherence to screening and self examination
(Lerman et al., 1991; Stefanek & Wilcox, 1991; Diefenbach et al.,
1999)
• Associated with a greater intention to undergo risk
reducing prophylactic surgery
(Meiser et al., 1999; van Dijk et al., 2003)
• Leads to decline/drop out of genetic testing and loss of
access to specialist support
(Kent et al., 2000; Phelps et al., 2012)
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Simple and cost effective self-help interventions can work!
http://www.cancergeneticsstorybank.co.uk/howdoicope.htm
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Future interventions at a public health level
Focused around education, attitude change, and managing
worry!
• Cost-effective
• Easily accessible
• Technology based e.g. mobile phone apps
BUT one size will never fit all!
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Conclusions
• Need to consider the knowledge, understanding and
attitudes of the general population in relation to genetic
testing.
• Implications of negative attitudes towards genetics on
wider lifestyle choices..
•
Health professionals can influence patients’ decisions
about health behaviours
• Psychological theory and research should play an
important role in public health genomics:
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What we don’t know....
• What attitudes do non-genetic specialists hold
towards genetics?
• How well do these health professionals
understand genetic information?
• How well can they deliver this to patients?
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“I have 4 children... I have 2 businesses and a
bloody big mortgage… I have to stay healthy; I
have to be able to work and to rear my
children. I need to know my risk of developing
X, how I can prevent it happening to me, how I
can catch it early enough to cure it...Bottom
line is I haven’t got time to die!”
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