Article Figures & Data
Tables
Characteristic No. (%) Age, years 10–19 9 (22.5) 20–29 10 (25.0) 30–39 9 (22.5) 40–49 8 (20.0) 50 + 4 (10.0) Sex Male 20 (50.0) Female 20 (50.0) Use of lipid-lowering medication 35 (88.0) Symptoms of coronary heart disease 7 (18.0) Children No 21 (52.5) Yes 19 (47.5) Occupation Professional or higher managerial 7 (17.5) Other nonmanual 7 (17.5) Skilled manual 4 (10.0) Manual 7 (17.5) Student, secondary education 14 (23.0) Disablement benefit 1 (0.0) Understanding of health and disease What does the word “health” mean to you? How do people stay healthy? Why do some people have better health than others? Are people able to control their own health? What is your image of the person who is at risk of heart disease? What does fate mean to you? Do you have a religious perspective on issues related to health and disease? The condition How did you get this condition and how was it diagnosed? Do you have any symptoms, ailments, pains, of anything that limits your daily activities? What influences how your condition will develop? How will this condition influence your own future health? To what extent are you able to influence how it develops? Understanding of risk, own vulnerability to disease What are the risks/uncertainties connected with your condition? How do you estimate your own vulnerability of developing coronary heart disease? Has the way you think about your own vulnerability to heart disease changed? What does the risk mean for you personally? What can you do to influence your risks? Do you make any efforts at reducing your risk? Experiences with the health service How has your contact with the health service been? How can health professionals help you manage your condition? What do you think about the information you have been given? Can health professional influence how you perceive your risk? The psychosocial context Has the condition influenced your quality of life? Have you talked with people outside your family about your condition? Can you give any examples of issues you would talk about? How do your family and friends manage your condition? How do you think other people perceive your condition (health professionals, friends, family, people in general)? Sources of knowledge, media What do you think about how your condition is portrayed in the media? In what way does information in the media influence how you understand your condition? Do you seek knowledge through other sources?
Additional Files
The Article in Brief
Perceived Vulnerability to Heart Disease in Patients With Familial Hypercholesterolemia: A Qualitative Interview Study
Jan C. Frich, MD, MSc, and colleagues
Background Patients' perceptions of how likely they are to get a disease in the future can influence their attitudes toward medical treatment and preventive health measures. This study explores how patients with familial hypercholesterolemia (an inherited condition that causes high cholesterol) view their risk of getting coronary heart disease, which commonly results from the condition.
What This Study Found In this study of 40 patients, family health history influences the ways in which participants' perceive their genetic and inherited risk of coronary heart disease, and the age at which they expect to develop symptoms. They compare themselves with other family members, focusing on sex, cholesterol levels, use of cholesterol-lowering medication, and lifestyle. Experiences such as cardiac illness in the family, other illness experiences, or becoming a parent cause a shift in some participants' sense of vulnerability to heart disease.
Implications
- Among people with familial hypercholesterolemia, unique life experiences and social factors help shape a sense of risk of developing coronary heart disease.
- Knowing how patients understand their family health history and risk of disease can help doctors (1) understand patients' level of readiness for preventive medical care, and (2) tailor medical care to patients' individual needs.
Annals Journal Club Selections:
May/June 2006
The Annals Journal Club is designed to encourage a learning community of those seeking to improve health care and health through enhanced primary care. Additional information is available on the Journal Club home page.Articles for Discussion
- Frich JC, Ose L, Malterud K, Fugelli P. Perceived vulnerability to heart disease in patients with familial hypercholesterolemia: a qualitative interview study. Ann Fam Med. 2006;4:198-204.
- Goldman RE, Parker D, Eaton C, et al. Patients' perceptions of cholesterol, cardiovascular disease risk, and risk communication strategies. Ann Fam Med. 2006;4:205-212.
Discussion Tips
Both journal club articles in this issue are qualitative research studies. Qualitative research involves methods that are particularly strong for discerning meaning and context from the perspective of the study group. Weaknesses of qualitative methods often relate to the degree of transparency of the analysis, the sampling of participants, and the transportability of the findings to other settings.1Discussion Questions
- Why is an understanding of patients� risk perception important?
- What are the strengths and weaknesses of the focus group study design (Goldman) versus the use of depth interviews (Frich)? How might the findings be different if the study questions were asked by surveys? What biases are apparent in the way the data were collected?
- How transparent does the analysis appear for both studies? Would the results be as trustworthy if the analyses were conducted by an individual rather than a team?
- How does the way the participants were selected affect your interpretation of the findings?
- In qualitative research, the term �saturation� is used to indicate that a sufficient sample has been achieved such that new participants contribute relatively little new information. Do these studies� claims of having reached saturation convince you that the important domains of information have been uncovered?
- What are the main findings of each study? How do the two studies inform each other?
- How transportable are the findings to other settings (particularly to yours)?
- What are the studies� implications for how clinicians should talk (or listen) to patients regarding risk and risk perception?
- With the much-vaunted advent of �personalized medicine�2,3 based on genetic information, how will patients and clinicians reach a shared understanding of familial risk and personal vulnerability to heritable illness? How can the studies' findings help clinicians and patients communicate about inherited disease risk?
- What do these studies say about the whole idea of (genomically) �personalized medicine� and how it might or might not be feasible and ethical in practice?
- What are the implications for training clinicians and educating patients?
- What are the policy implications of these findings, eg for reimbursement for primary care visits?
- To explore the HeartAge calculator, visit www.heartage.com.
References
- Crabtree BF, Miller WL, eds. Doing Qualitative Research. 2nd ed. Newbury Park, California: Sage Publications; 1999.
- Snyderman R, Langheier J. Prospective health care: the second transformation of medicine. Genome Biol. 2006;7:104. Epub 2006 Feb 27.
- Langreth R, Waldholz M. New era of personalized medicine: targeting drugs for each unique genetic profile. Oncologist. 1999;4:426-427.
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