‘Coming Down the Line’— Patients’ Understanding of Their Family History of Common Chronic Disease

Fiona M. Walter; Jon Emery

doi:10.1370/afm.368

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Accuracy of the family medical history
Fiona M Walter

Published on: 18 October 2005
Better understanding of the patient perception of family history will improve care
Peter W Rose

Published on: 30 September 2005
Need to assess accuracy of patient-reported history
Richard E. Allen

Published on: 29 September 2005

Published on: (18 October 2005)
Page navigation anchor for Accuracy of the family medical history
Accuracy of the family medical history
Fiona M Walter, Cambridge, UK
Other Contributors:
We agree with Allen’s concerns about the accuracy of patient-given medical and family history, and acknowledge that self-reported family history is not always valid. Accuracy may be influenced by the cancer site as well as the closeness of family relationship: a Canadian study showed that reports of cancer sites in first-degree relatives were generally accurate (breast 99%, ovary 100%, colon 93%), although information...
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We agree with Allen’s concerns about the accuracy of patient-given medical and family history, and acknowledge that self-reported family history is not always valid. Accuracy may be influenced by the cancer site as well as the closeness of family relationship: a Canadian study showed that reports of cancer sites in first-degree relatives were generally accurate (breast 99%, ovary 100%, colon 93%), although information was less accurate about second-degree relatives (breast 85%, colon 72%) and age of diagnosis (92% for first-degree relatives, 54% second degree relatives)(1). However, the recent US study of cancer reports in deceased first-degree relatives using death certificates and the National Death Index reported less accuracy(2).
In the UK and Australia a cancer diagnosis can be verified using the cancer registry but this is time-consuming and requires a relative’s consent, and therefore is unlikely to be practical in general practice. Electronic health records could potentially improve the confirmation of the relatives' disease but issues of privacy remain. At best, primary health practitioners can ask relatives to try and confirm the diagnosis through family discussion and sharing their family medical records. Ultimately, when issues of genetic testing arise, it will be the role of the genetics clinics to formally validate a family history.
References
1. Theis B, Boyd N, Lockwood G, Tritchler D. Accuracy of family cancer history in breast cancer patients. Eur J Cancer Prev 1994;3:321-7.
2. Rauscher GH, Sandler DP. Validating cancer histories in deceased relatives. Epidemiology 2005;16:262-5.
Competing interests: None declared
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Competing Interests: None declared.
Published on: (30 September 2005)
Page navigation anchor for Better understanding of the patient perception of family history will improve care
Better understanding of the patient perception of family history will improve care
Peter W Rose, Oxford, UK
In the past, medical literature about the family history has tended to concentrate on the ‘head counting’ approach of taking a medical history to enable the identification of a genetic mutation whereas the psycho- social literature has concentrated on lay beliefs about inheritance. This paper by Walter and Emery is novel because it tackles these issues together and within a primary care population. There are important mes...
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In the past, medical literature about the family history has tended to concentrate on the ‘head counting’ approach of taking a medical history to enable the identification of a genetic mutation whereas the psycho- social literature has concentrated on lay beliefs about inheritance. This paper by Walter and Emery is novel because it tackles these issues together and within a primary care population. There are important messages in the paper for family doctors; in the consulting room the medical and sociological aspects present together and are often indecipherably intertwined.
As the authors point out, primary care professionals may take a family history to understand the psycho-social context of a disease or to identify inherited risk factors. The family history has also been used as a screening tool. The paper contributes to the understanding of the way patients perceive and cope with a family history. It reinforces previously identified concepts such as the (false) belief of vulnerability due to shared external characteristics, fatalism about preventive measures due to a family history and the fact that an illness that causes death is more serious than one that does not. In addition it identifies important new features of the proposed model such as the additional emotional impact of witnessing the illness of a relative.
Knowledge of the model of familial risk perception will improve patient care, not only for primary care professionals, but for any medical professional who takes a family history. The ability of doctors to understand the patient perspective will become more important as genetics plays an increasing role in the assessment of patients with common multifactorial diseases. The ‘take home’ message from this paper is that the exploration of patients’ ideas and concerns is as essential as ‘head counting’ when asking about family history.
One aspect of family history that is not explored in the paper is the fact that cancer, and to a lesser extent heart disease and diabetes are not single disease entities. Another primary care study (1) showed that patients perceived themselves to be at risk of cancer when relatives suffered from genetically unrelated cancers. It would be interesting to know if this theme emerged in this research and how public education on this aspect of diseases might affect their perception of vulnerability.
1. Rose P, Humm E, Hey K, Jones L, Huson SM. Family history taking and genetic counselling in primary care. FamPract 1999; 16:78-83.
Competing interests: None declared
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Competing Interests: None declared.
Published on: (29 September 2005)
Page navigation anchor for Need to assess accuracy of patient-reported history
Need to assess accuracy of patient-reported history
Richard E. Allen, Salt Lake City, USA
I appreciate the study by Walter and Emery as a qualitative description of the effect of perceived family history based on patient interviews. This helps us deal with patients psychologically as we understand their perception of vulnerability and willingness to change.
What is not addressed in this study, however, is the accuracy of patient-given medical and family history. This is ultimately more important...
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I appreciate the study by Walter and Emery as a qualitative description of the effect of perceived family history based on patient interviews. This helps us deal with patients psychologically as we understand their perception of vulnerability and willingness to change.
What is not addressed in this study, however, is the accuracy of patient-given medical and family history. This is ultimately more important for a treating physician to understand. A patient who reports that "heart disease runs in the family" may be referring to early atherosclerosis in first-degree males, or to atrial fibrillation in a distant aunt, or the fact that grandmother complained of palpitations in her later years. The clinical significance of these three vastly different scenarios is very important for the clinician to understand.
I am presently studying the (in)accuracy of physician-elicited patient-reported medical history. This will add to the body of evidence demonstrating our need for centralized internet-based medical records and/or portable patient records. Someday we'll know a patient's history better than the patient does, and then be able to explore how that history affects health behavior and attitudes.
References: 1- Does this patient have a family history of cancer? An evidence-based analysis of the accuracy of family cancer history. JAMA 2004 Sep 22;292(12):1480-9.
2- Agreement between patient reports of cardiovascular disease and patient medical records. Mayo Clin Proc 2005 Feb;80(2):203-10.
Competing interests: None declared
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Competing Interests: None declared.