Brief ReportPut the Family Back in Family Health History: A Multiple-Informant Approach
Introduction
More than a decade ago, the Surgeon General launched the Family History Initiative, which included a series of efforts to increase public awareness about the value of family health history (FHH) for tailored disease prevention and medical care.1 This was motivated by research showing that FHH tapped into the joint effect of shared genetic and environmental risk factors clustered in families, making it a robust predictor of many conditions.2, 3, 4 Accordingly, many advocate using FHH for preventing complex diseases such as heart disease and Type 2 diabetes mellitus (T2DM).5, 6, 7
In clinical practice, FHH is routinely collected but underutilized, owing in part to inaccuracy in self-reports.8, 9, 10, 11, 12 When validated with medical records, accuracy of individuals’ reports of parental history is 74% for heart disease, about 60% for T2DM, about 50% for hypertension, and less than 20% for high cholesterol.11 New tools such as pedigree workbooks and online software support better FHH collection,13, 14, 15, 16 but focus on individuals instead of harnessing the potential of families. Informants may have different perceptions of a common biological family member’s health history. Capitalizing on a multiple-informant approach, this report addresses two questions:
- 1
Do informants have consistent perceptions of common family members’ health history?
- 2
Does accounting for (in)consistency lead to more accurate risk assessment?
Section snippets
Study Population
Initial participants were recruited as part of a study of families affected by T2DM in the Greater Cincinnati Area. They were asked to refer biological relatives with or without T2DM to the study. This process generated a sample of 155 participants from 70 families of diverse backgrounds, with 39% African American and 14% self-reported Appalachian heritage. Data were collected in 2012–2013 by interviewers specialized in genetic counseling. This 2015–2016 analysis, conducted using Stata, version
Results
Reports about common family members’ T2DM diagnosis showed the highest degree of consistency (61%) and lowest degree of mixed response (5%, Figure 1). Consistency was slightly lower for reports on heart disease (54%, p<0.01 versus T2DM) and remarkably lower for high cholesterol and hypertension (43% and 41%, respectively; p<0.001 versus T2DM). Although there were mixed responses for all four conditions (5%–16%), inconsistency largely resulted from one informant not knowing FHH (21%–30%).
The
Discussion
Consistent with previous studies,9, 10, 11, 12 the results suggest inaccuracy in self-reported FHH data, evidenced by inconsistent reports within families. Linking pedigrees within families yields a risk assessment that can uncover a sizable proportion of individuals at risk for complex diseases. These findings have both research and clinical implications. Rather than discarding discrepant data from multiple informants, researchers can assign proper adjustments, so that information from
Conclusions
This report links FHH reports within families to obtain a more informed risk assessment tool with improved accuracy. Despite the limitations, it provides one example of realizing the potential of a family-oriented approach to FHH, echoing the repeated call to “put the family back in family health history.”8 Future research should continue to leverage this approach to ensure better utilization of this clinical tool.
Acknowledgments
This research is supported by the National Human Genome Research Institute’s Intramural Research Program (ZIAHG200335 to LMK) and a National Institute of Diabetes and Digestive and Kidney Diseases grant (K18DK095473 to MFM). The views expressed in this article are those of the authors and do not reflect the official policy or positions of NIH, DHHS, or the U.S. Government.
IRBs at the University of Cincinnati (2013-4924) and National Human Genome Research Institute (12-HG-N149) approved the
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