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

Proband-reported family histories are widely used in research and counselin g, yet little is known about the validity of family history reporting. The Family Heart Study (FHS), a population-based study of familial cardiovascul ar disease, gathered family history information from 3,020 middle-aged prob ands in four U.S. communities. Probands reported on the history of coronary heart disease (CHD), diabetes, hypertension, and asthma among a total of 1 0,316 living relatives (9,186 siblings, 1,130 parents) and 2,685 spouses. Q uestionnaires were returned by 6,672 siblings, 901 parents, and 2,347 spous es, yielding response rates of 73, 79, and 87%, respectively. Utilizing the relatives' self-report as the standard, sensitivity of the proband report on their spouse, parent, and sibling was 87, 85, and 81% for CHD, 83, 87, a nd 72% for diabetes, 77, 76, and 56% for hypertension, and 66, 53, and 39% for asthma, respectively. Most specificity values were above 90%. Analyses using generalized estimating equations (GEE) were performed to evaluate dif ferences in proband accuracy based on the proband's age, gender, disease st ate, center, and ethnicity. In multi-variate models, age, gender, and disea se status were significantly associated with the accuracy of proband's repo rt of sibling disease history, but had little effect on the accuracy of the ir report on spouses or parents. In general, older probands were significan tly less accurate reporters of disease than younger probands. These results demonstrate that CHD family history can be captured effectively based on p roband reports, but suggest that additional family contacts may be helpful when working with older probands or with chronic diseases that have few rec ognized medical events or procedures. (C) 1999 Wiley-Liss, Inc.