Lay Understanding of Familial Risk of Common Chronic Diseases: A Systematic Review and Synthesis of Qualitative Research

Walter and colleagues’ article reports exemplary qualitative research.1 They induced plausible third-order constructs that describe how individuals understand and respond to their family history of chronic disease—salience, personalizing, personal sense of vulnerability, and coping and control. These findings are important in the genome era, and in light of information about higher relative risk associated with sibling versus parental history of premature coronary heart disease (CHD).2

Our group’s investigation of hypercholesterolemic patients’ beliefs and attitudes complements their findings.3 We elicited beliefs about the use of chronic statin therapy to prevent coronary heart disease (CHD) events, in individual interviews and focus groups. Our research and clinical patients have suggested numerous inputs and components for the identified processes, including:

-having other diseases and CHD risk factors

-understanding and interpretation of CHD risk

-emotional response (fear) generated by personalized risk information

-anticipated lifespan

-self-efficacy to reduce CHD risk

-attitude toward and experience with taking chronic preventive prescription medication

-belief in statin efficacy for reducing risk

-apprehension about possible adverse side effects of statins (almost universal)

-wariness of taking prescription drugs because they are “not natural”

-media messages

-family-of-origin beliefs and behaviors

-acquaintance having a heart attack

-experiencing symptoms that could foreshadow CHD

-being diagnosed with CHD

-health care provider communication about statin therapy

-trust in care provider’s recommendations

-trust in other entities (eg, FDA)

-sharing decision making with care provider, family, or others

-level of anticipated regret of not having taken a statin, if heart attack were to occur in the future

-out-of-pocket cost of statin therapy

-decision heuristics (mental shortcuts) commonly used:

“Doctor Knows Best”,

“Act to Avoid Harm”,

“Won’t Hurt to Try It”,

“What, Me Worry”,

“What’s the Use”,

“Avoid Harm-by-Commission”,

“Natural is Better”.

Decision heuristics explain how people make decisions quickly, using minimal information.4

Some models of decision making5 encompass these findings and those of functional magnetic resonance imaging (fMRI) studies indicating two decision-making pathways operate in the human brain—one deliberative and analytic, and the other emotional.6 Individuals often appear to make decisions about what to do about family history of serious disease by using simple decision heuristics that involve the emotional pathway. Health care providers and educators could benefit from identifying patients’ decision heuristics and engaging patients in various blends of emotional and analytical decision making.

References:

1. Walter FM, Emery J, Braithwaite D, Marteau TM. Ann Fam Med 2004;2:583-594.

2. Nasir K, Michos ED, Rumberger JA, Braunstein JB, Post WS, Budoff MJ, Blumenthal RS. Coronary artery calcification and family history of premature coronary heart disease. Circulation 2004 Oct 12;110(15):2150- 2156.

3. Crouch MA, Whitney S, Volk R, Pavlik V, Cheak N, Benavidez V, McCulloch L. Informed Consent, Shared Decision Making, and Acceptance of Statin Therapy. Presented at the North American Primary Care Research Group (NAPCRG) Conference, Orlando, FL, Canada, Oct 10, 2004.

4. Gigenrenzer G, Todd PM. Simple Heuristics that Make Us Smart. New York: Oxford University Press, 1999.

5. Witte K, Meyer G, Martell D. Effective health risk messages: a step-by-step guide. New York: Sage Publications, 2001.

6. McClure SM, Laibson DI, Loewenstein G, Cohen JD. Separate neural systems value immediate and delayed monetary rewards. Science 2004 Oct 15; 306:503-7.

Competing interests:   I have received honoraria from Pfizer, Merck, Bristol-Meyers-Squibb, and the Almond Board for presentations on dyslipidemia management.