Institute for Research in Extramural Medicine VU University Medical Centre Amsterdam

1. Institute for Research in Extramural MedicineVU University Medical Centre Amsterdam The Risky Self Understanding the relationships between genetic risk information, risk perception, self-concept, and health related behaviour Liesbeth Claassen1, Daniëlle Timmermans1, Lidewij Henneman1, Theresa Marteau2 1 Dept. Public and Occupational Health/ EMGO-Institute, VUMC, Amsterdam 2 Psychology & Genetics Research Group, King’s College London

2. Background • Advances in Genomics research; development of genetic testing and increasing knowledge of the genetic component of multifactorial diseases • Knowledge of a health risk may motivate people to engage in preventive behaviour and preventive treatment (e.g. stop smoking and regular checkups) But: • (Some) people may experience health risk and especially genetic risks as unchangeable and may not be motivated to change behaviour

3. Objectives The way in which people experience their ‘at risk’ status may influence adherence to preventive treatment, it thus seems relevant to investigate: • How people perceive, process and respond to risk information • If genetic risk information is experienced differently • Differences between people

4. Origins of health risks • Genetic risk: mutation in one or multiple genes so that it can no longer perform its normal function • Lifestyle (e.g smoking) • Environment (e.g pollution) Often (especially when multiple genes are involved) genetic, lifestyle (and environmental) factors act together to cause the expression of a disease.

5. Assessing (genetic) susceptibility for a disease • DNA-test: • More and more available for monogenetic diseases (e.g. cystic fibrosis, Huntington disease) • For multifactorial diseases, such as cardiovascular diseases and diabetes, still limited. • Risk stratification based on family history: • Reflects the consequences of genetic susceptibility, shared environment and common behaviours • Establishing the presence of (other) risk factors: • Blood tests (e.g. cholesterol, glucose level) • Blood pressure, smoking status, obesity, lack of physical activity

6. Differences between people (1) • Knowledge of the disease • Experiences with the disease • Cognitive capacity to understand risk information • Personality factors => Self concept

7. People with a static self concept Use fixed traits (over time and situations) to categorize themselves See traits as primary causes of behaviour Process self relevant information relatively automatic People with a dynamic self concept Understand themselves in terms of goals, needs and states of mind Put more emphasis on situational influences in explaining behaviour Are motivated to process self relevant systematically Differences between people (2)The self concept

8. Mental model of ‘at risk’ status • Mental model of health and illness • Illness representations • Identity; labels and symptoms • Causes; role of genes and lifestyle • Time line; unset and course • Consequences; possible outcomes, social effects, affective reactions • Controllability; self efficacy, response efficacy • Perceived health • Risk perception: • Perceived susceptibility • Perceived severity

9. Attitudes towards health and lifestyle Self-concept Knowledge Experience Cogn.capacity • Mental model of • ‘at risk’ status: • Illness representations • Risk perception • Perceived health Health related behaviour Protection motivation Affective reactions Model Information about health risks

10. Main research Questions • What is the effect of different types of health risk information (genetic, lifestyle, family history) on the mental models of health and illness and on the motivation to engage in preventive behaviour. • What is the effect of self concept on mental models of health and illness? • What is the relation between mental models of health and illness and the motivation to engage in preventive behaviour.

11. Research designDescriptive research based on semi-structured interviews and postal self report questionnaires(cross sectional)

12. Analysis • Differences between groups: • Type of risk (genetic, lifestyle or family history) • Dynamic or static self concept • Other person variables such as: gender, age, education level • Correlations between: • Type of risk • Self concept • Risk perception • Health related behaviour

13. Inclusion /exclusion criteria: Participants are: • Informed about being at risk for cardiovascular disease or diabetes mellitus type 2 by a general practitioner, counsellor or specialist at least 6 months earlier • Show no signs of illness • Have a good understanding of the Dutch language and are able to complete questionnaires in Dutch

14. Men and women at risk for cardiovascular disease (CVD): • With a mutation for Familial Hypercholesterolemia (FH) established by-DNA testing (age >18) • => asked to participate by the StOEH (foundation for tracing people with FH) • Group 2 en 3: People between the age of 50 and 65, with high cholesterol, high blood pressure and/or smokers • => asked to participate by their general practitioner • With a positive family history of at least 1 first degree relative with CVD (onset before the age of 60) • Without a positive family history of CVD

15. Men and women between the age of 55 –75 at risk for Diabetes Mellitus type 2 (DM2): • People who participated in the Hoorn-Screening Study (a study of the the effectiveness of targeted screening for DM2) in 1998-2000, and scored > 6 on a specially designed Symptom Risk Questionnaire • With a family history of a least one first degree relative with diagnosed diabetes • Without a family history of diagnosed diabetes

16. Research problems • Comparability of groups: - Population • In/exclusion criteria (e.g. age) • Enrolment - Differences in received risk information • Measuring constructs (e.g. self concept, mental models of health an illness) Questions and suggestions?