Institute for Research in Extramural MedicineInstitute for Research in Extramural MedicineVU University Medical Centre AmsterdamVU University Medical Centre Amsterdam

The Risky SelfThe Risky Self

Understanding the relationships between genetic Understanding the relationships between genetic risk information, risk perception, self-concept, risk information, risk perception, self-concept, and health related behaviourand health related behaviour

Liesbeth ClaassenLiesbeth Claassen11, Daniëlle Timmermans, Daniëlle Timmermans11, Lidewij Henneman, Lidewij Henneman11, , Theresa MarteauTheresa Marteau22

11 Dept. Public and Occupational Health/ EMGO-Institute, VUMC, Dept. Public and Occupational Health/ EMGO-Institute, VUMC,

AmsterdamAmsterdam

2 2 Psychology & Genetics Research Group, King’s College London

BackgroundBackground

• Advances in Genomics research; development of Advances in Genomics research; development of genetic testing and increasing knowledge of the genetic testing and increasing knowledge of the genetic component of multifactorial diseases genetic component of multifactorial diseases

• Knowledge of a health risk may motivate people to Knowledge of a health risk may motivate people to engage in preventive behaviour and preventive engage in preventive behaviour and preventive treatment (e.g. stop smoking and regular checkups)treatment (e.g. stop smoking and regular checkups)

But: But:

• (Some) people may experience health risk and (Some) people may experience health risk and especially genetic risks as unchangeable and may especially genetic risks as unchangeable and may not be motivated to change behaviournot be motivated to change behaviour

ObjectivesObjectives

The way in which people experience their ‘at risk’ status The way in which people experience their ‘at risk’ status may influence adherence to preventive treatment, it thus may influence adherence to preventive treatment, it thus seems relevant to investigate:seems relevant to investigate:

– How people perceive, process and respond to risk How people perceive, process and respond to risk informationinformation

– If genetic risk information is experienced differentlyIf genetic risk information is experienced differently– Differences between peopleDifferences between people

Origins of health risksOrigins 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.

Assessing (genetic) susceptibility for a diseaseAssessing (genetic) susceptibility for a disease

• DNA-test: DNA-test: – More and more available for monogenetic diseases More and more available for monogenetic diseases

(e.g. cystic fibrosis, Huntington disease) (e.g. cystic fibrosis, Huntington disease) – For multifactorial diseases, such as cardiovascular For multifactorial diseases, such as cardiovascular

diseases and diabetes, still limited.diseases and diabetes, still limited.• Risk stratification based on family history: Risk stratification based on family history:

– Reflects the consequences of genetic susceptibility, Reflects the consequences of genetic susceptibility, shared environment and common behavioursshared environment and common behaviours

• Establishing the presence of (other) risk factors: Establishing the presence of (other) risk factors: – Blood tests (e.g. cholesterol, glucose level)Blood tests (e.g. cholesterol, glucose level)– Blood pressure, smoking status, obesity, lack of Blood pressure, smoking status, obesity, lack of

physical activityphysical activity

Differences between people (1)

• Knowledge of the disease• Experiences with the disease • Cognitive capacity to understand risk information• Personality factors => Self concept

Differences between people (2)Differences between people (2)The self conceptThe self concept

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

Mental model of ‘at risk’ statusMental model of ‘at risk’ status

• Mental model of health and illnessMental model of health and illness – Illness representations Illness representations

• Identity; labels and symptomsIdentity; labels and symptoms• Causes; role of genes and lifestyle Causes; role of genes and lifestyle • Time line; unset and courseTime line; unset and course• Consequences; possible outcomes, social effects, affective Consequences; possible outcomes, social effects, affective

reactionsreactions• Controllability; self efficacy, response efficacy Controllability; self efficacy, response efficacy

– Perceived healthPerceived health • Risk perception: Risk perception:

– Perceived susceptibility Perceived susceptibility – Perceived severityPerceived severity

ModelModel

Information about health risks

Self-conceptKnowledgeExperience Cogn.capacity

Attitudes towards health and lifestyle

Affective reactions

Protectionmotivation

Health related behaviour

Mental model of ‘at risk’ status:• Illness representations• Risk perception• Perceived health

 

Main research QuestionsMain research Questions

1.1. What is the effect of different types of health risk What is the effect of different types of health risk information (genetic, lifestyle, family history) on the information (genetic, lifestyle, family history) on the mental models of health and illness and on the mental models of health and illness and on the motivation to engage in preventive behaviour. motivation to engage in preventive behaviour.

2.2. What is the effect of self concept on mental models What is the effect of self concept on mental models of health and illness?of health and illness?

3.3. What is the relation between mental models of What is the relation between mental models of health and illness and the motivation to engage in health and illness and the motivation to engage in preventive behaviour.preventive behaviour.

Research designResearch designDescriptive research based on Descriptive research based on semi-structured interviews and semi-structured interviews and postal self report questionnairespostal self report questionnaires (cross sectional)(cross sectional)

At risk for CVDCardiovascular disease

At risk for DM2 Diabetes mellitus type 2

Genetic 1. Established genetic risk for CVD (DNA test)

Family History

2. Relatives with CVD 4. Relatives with DM2

Lifestyle 3. Lifestyle risk for CVD 5. Lifestyle risk for DM2

Analysis

• Differences between groups: Differences between groups: – Type of risk (genetic, lifestyle or family history)Type of risk (genetic, lifestyle or family history)– Dynamic or static self conceptDynamic or static self concept– Other person variables such as: gender, age, education levelOther person variables such as: gender, age, education level

• Correlations between:Correlations between:– Type of risk Type of risk – Self concept Self concept – Risk perceptionRisk perception– Health related behaviourHealth related behaviour

Inclusion /exclusion criteria:Inclusion /exclusion criteria:

Participants are:Participants are:

• Informed about being at risk for cardiovascular Informed about being at risk for cardiovascular disease or diabetes mellitus type 2 by a general disease or diabetes mellitus type 2 by a general practitioner, counsellor or specialist at least 6 practitioner, counsellor or specialist at least 6 months earliermonths earlier

• Show no signs of illness Show no signs of illness

• Have a good understanding of the Dutch language Have a good understanding of the Dutch language and are able to complete questionnaires in Dutchand are able to complete questionnaires in Dutch

1.1. With a mutation for Familial Hypercholesterolemia (FH) With a mutation for Familial Hypercholesterolemia (FH) established by-DNA testing (age >18)established by-DNA testing (age >18)

=> => asked to participate by the StOEH (foundation asked to participate by the StOEH (foundation for tracing for tracing people with FH) people with FH)

Group 2 en 3: People between the age of 50 and 65, with Group 2 en 3: People between the age of 50 and 65, with high cholesterol, high blood pressure and/or smokers high cholesterol, high blood pressure and/or smokers

=> => asked to participate by their general practitionerasked to participate by their general practitioner

2.2. With a positive family history of at least 1 first degree With a positive family history of at least 1 first degree relative with CVD (onset before the age of 60) relative with CVD (onset before the age of 60)

3.3. Without a positive family history of CVD Without a positive family history of CVD

Men and women at risk for cardiovascular diseaseat risk for cardiovascular disease (CVD): (CVD):

People who participated in the Hoorn-Screening Study (a People who participated in the Hoorn-Screening Study (a study of the the effectiveness of targeted screening for DM2) study of the the effectiveness of targeted screening for DM2) in 1998-2000, and scored > 6 on a specially designed in 1998-2000, and scored > 6 on a specially designed Symptom Risk QuestionnaireSymptom Risk Questionnaire

4.4. With a family history of a least one first degree relative With a family history of a least one first degree relative with diagnosed diabetes with diagnosed diabetes

5.5. Without a family history of diagnosed diabetesWithout a family history of diagnosed diabetes

Men and women between the age of 55 –75 at risk Men and women between the age of 55 –75 at risk for Diabetes Mellitus type 2 (DM2):for Diabetes Mellitus type 2 (DM2):

Research problemsResearch problems

• Comparability of groups:Comparability of groups:

- Population- Population• In/exclusion criteria (e.g. age)In/exclusion criteria (e.g. age)• EnrolmentEnrolment

- Differences in received risk information- Differences in received risk information• Measuring constructs (e.g. self concept, mental Measuring constructs (e.g. self concept, mental

models of health an illness)models of health an illness)

Questions and suggestions?Questions and suggestions?