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Systematic Reviews:
Fiona M. Walter, Jon Emery, Dejana Braithwaite, and Theresa M. Marteau
Lay Understanding of Familial Risk of Common Chronic Diseases: A Systematic Review and Synthesis of Qualitative Research
Ann Fam Med 2004; 2: 583-594 [Abstract] [Full text] [PDF]
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Electronic letters published:

[Read Comment] Response to Professor Gramling
Fiona M Walter, Jon Emery   (11 January 2005)
[Read Comment] Beyond math: meaning and risk
Robert E Gramling   (15 December 2004)
[Read Comment] Decision Making Implications
Michael A. Crouch, Simon Whitney, MD, JD, Robert Volk, PhD (same affiliation)   (3 December 2004)

Response to Professor Gramling 11 January 2005
Previous Comment  Top
Fiona M Walter,
University of Cambridge, UK
GP Research Fellow,
Jon Emery

Send response to journal:
Re: Response to Professor Gramling

'Professor Gramling highlights our findings that discussions about familial risk need to include not only probabilities and epidemiological data, but also go 'beyond maths' to engage with the psychosocial and cultural meaning of familial risk to our patients.

We have used the findings from this review to inform an interview study of people from primary care with a family history of diabetes, heart disease or cancer, to explore their understanding of familial risk. The findings demonstrate the nature of personal relationships within a family that determine a sense of emotional closeness and personal likeness with the affected relative, and show that all the elements contribute to the perception of disease risk. This manuscript is in submission.

We are also extending our use of this method of qualitative meta- analysis with a new study looking at patient experiences of diabetic care.'

Competing interests:   None declared

Beyond math: meaning and risk 15 December 2004
Previous Comment Next Comment Top
Robert E Gramling,
Providence, RI
Family Physician/Epidemiologist, Brown University

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Re: Beyond math: meaning and risk

“Genetics in Primary Care” has received growing attention over the last decade. During this time, we have also recognized the need to address systems, interpersonal and socio-cultural barriers to patient- centered communication in the busy practice setting. The convergence of these forces has many concerned about how we will translate probabilistic results of genetic risk assessment into meaningful communication with our patients. While parallel work is focused on transfer of numerical information in contexts of low numeracy, I believe that research such as that presented here by Drs.Walter, Emery, Braithwaite and Marteau will help us in more tangible ways to open channels of two-way communication about heredity, genetics and risk with our patients.

Our models of predicting risk use medico-epidemiologic definitions of risk as a probability of disease occurrence. However, the authors analyses provide strong evidence to the potential for our discussions about risk to be “passing ships in the night” if we, as clinicians attend only to the probability dimensions of risk and perception.

This article also struck me as a great model for presenting qualitative meta-analytic methods to an audience of diverse methodologists. The presentation of the methodology was accessible to those of us without a strong qualitative background yet complete enough for my qualitative methodologist colleagues (who read the article).

I look forward to the authors’ use of the framework emerging from this study in future research endeavors. Do you have related work in progress for which we should keep an eye out?

Competing interests:   None declared

Decision Making Implications 3 December 2004
 Next Comment Top
Michael A. Crouch,
Houston, Texas, USA
MD, MSPH, family physician, Dept Family & Community Medicine, Baylor College of Medicine,
Simon Whitney, MD, JD, Robert Volk, PhD (same affiliation)

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Re: Decision Making Implications

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.


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