Put the Family Back in Family Health History: A Multiple-Informant Approach

doi:10.1016/j.amepre.2016.11.018

American Journal of Preventive Medicine

Volume 52, Issue 5, May 2017, Pages 640-644

https://doi.org/10.1016/j.amepre.2016.11.018 Get rights and content

Introduction

An accurate family health history is essential for individual risk assessment. This study uses a multiple-informant approach to examine whether family members have consistent perceptions of shared familial risk for four common chronic conditions (heart disease, Type 2 diabetes, high cholesterol, and hypertension) and whether accounting for inconsistency in family health history reports leads to more accurate risk assessment.

Methods

In 2012–2013, individual and family health histories were collected from 127 adult informants of 45 families in the Greater Cincinnati Area. Pedigrees were linked within each family to assess inter-informant (in)consistency regarding common biological family member’s health history. An adjusted risk assessment based on pooled pedigrees of multiple informants was evaluated to determine whether it could more accurately identify individuals affected by common chronic conditions, using self-reported disease diagnoses as a validation criterion. Analysis was completed in 2015–2016.

Results

Inter-informant consistency in family health history reports was 54% for heart disease, 61% for Type 2 diabetes, 43% for high cholesterol, and 41% for hypertension. Compared with the unadjusted risk assessment, the adjusted risk assessment correctly identified an additional 7%–13% of the individuals who had been diagnosed, with a ≤2% increase in cases that were predicted to be at risk but had not been diagnosed.

Conclusions

Considerable inconsistency exists in individual knowledge of their family health history. Accounting for such inconsistency can, nevertheless, lead to a more accurate genetic risk assessment tool. A multiple-informant approach is potentially powerful when coupled with technology to support clinical decisions.

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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In high-income countries where the utilization of allopathic medicine is high, patients are often asked about family health history to help identify whether they are at increased risk and to recommend early screening, genetic testing and/or lifestyle changes to manage risk. Thus, a growing literature in these countries has explored the transmission of family health history and interventions to increase family health history knowledge [5,10,16–18,20,21,23,26]. In the African context, where biomedical models of health and access to and utilization of allopathic medicine are less prevalent, the literature relating to family history of chronic disease is more limited; literature retrieved in searches often focused on hereditary conditions such as sickle cell disease and had less emphasis on the sharing and use of family health histories in care and prevention [1,13,19,24,27,32].
Knowledge of family health history can help to mitigate risk for chronic non-communicable diseases known to run in families. However, disclosure of disease or illness is not always a given. This paper explores the relationship between care and intrafamilial communication regarding chronic health conditions in Ghanaian families, drawing on concepts of generativity and reciprocity. Data were drawn from a qualitative description study on family histories and health. This paper analyzes four focus group discussions and two intergenerational family interviews conducted among 35 older adults and their adult children and grandchildren in the Greater Accra Region of Ghana. Data were analyzed thematically using an inductive approach and themes relating to care and intrafamilial communication were assessed for this analysis. Findings showed that intergenerational care can serve as a means to disclose and communicate family health histories while disclosure of illness serves as a means to receive and give care for oneself and one's family. Furthermore, care services can sometimes be a barrier to communication of family health histories while concealment of disease and of family health histories and identities may be a form of care. Finally, intergenerational family health history discussions may prompt encouragement of care-seeking behaviors and preventive care. The results of this pilot study suggest avenues through which care arrangements could be capitalized on to promote the sharing of health history information within families to better manage chronic disease risk. In addition, they illustrate the potential for family health history discussions to further encourage care-seeking for chronic disease prevention.
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The research questions are: (1) which family communication frameworks have been applied, (2) how do intervention strategies employed map to these theories, and (3) to what extent were families receptive to these strategies and communication increased?
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Published by Elsevier Inc. on behalf of American Journal of Preventive Medicine

Brief ReportPut the Family Back in Family Health History: A Multiple-Informant Approach

Introduction

Methods

Results

Conclusions

Introduction

Section snippets

Study Population

Results

Discussion

Conclusions

Acknowledgments

Am J Cardiol

Am J Prev Med

J Clin Epidemiol

Personalizing prevention: the U.S. Surgeon General’s Family History Initiative

Am Fam Physician

Family history: a comprehensive genetic risk assessment method for the chronic conditions of adulthood

Am J Med Genet

Reconsidering the family history in primary care

J Gen Intern Med

The family history—more important than ever

N Engl J Med

Family history in public health practice: a genomic tool for disease prevention and health promotion

Annu Rev Public Health

Family health history: the case for better tools

JAMA

Accuracy of proband reported family history: the NHLBI Family Heart Study (FHS)

Genet Epidemiol

Brief Report
Put the Family Back in Family Health History: A Multiple-Informant Approach