1. Genetic risk, motivation and behaviour Dr Ceri Phelps, CPsychol, Csci, AFBPsS Registered Health Psychologist

2. 2 Genetic risk, motivation and behaviour

3. GENETICS Genetics

4. 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?

5. What do we know about genetic risk, motivation and behaviour….? And how can this be applied to public health? 5

6. 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 well- informed general public are is paramount… 6

7. 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 7

8. Attitudes influence health behaviours. 8

9. 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) 9

10. Theory of Planned Behaviour Predicting interest in genetic testing…

11. Theory of Planned Behaviour Predicting interest in genetic testing… Public health interventions? Education Awareness raising Attitude change

12. 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.

13. 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

14. People are not always rational decision makers 14

15. 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 15

16. 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

17. Illness Perceptions Questionnaire- revised (Moss-Morris et al., 2002) Measures the five IRs identified by Leventhal et al. Also includes: – emotional representations, – illness coherence, – beliefs about personal control.

18. 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) Leventhal’s Self Regulation Model

19. 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?

20. 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.

21. 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

22. 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

23. Illness representations acquired through: – Media – Personal experience – Family & Friends May be inaccurate! Can be changed! Leventhal’s Self Regulation Model

24. 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

25. 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 “I find it hard to understand that if so many people in my family have had breast cancer that they felt I was not at risk. I keep thinking ‘what if they got it wrong!?’ 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

26. What you say (or how you say it) matters. 26

27. Hutchings, Fitzgerald & Phelps (2013) 27

28. Illness Perceptions at Time 3 Average n=31 Moderate n=53 High n=36 Mean (SD) Consequences16.30 (5.00)16.42 (4.36)17.96 (4.76) Personal control18.83 (2.97)17.60 (3.31)18.21 (3.38) Treatment control13.89 (3.09)14.27 (2.36)14.70 (2.96) Illness coherence9.60 (2.96)10.71 (2.56)11.77 (2.30) Post-risk ANOVA: Illness perceptions by risk group 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)

29. Helping people to manage their worries is important 29

30. 30 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)

31. 31 Simple and cost effective self-help interventions can work! http://www.cancergeneticsstorybank.co.uk/howdoicope.htm

32. 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! 32

34. 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: 34

35. 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? 35

36. 36 “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!”