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Evaluation of the Family History Collection Process and the Accuracy of Cancer Reporting among a Series of Women with Endometrial Cancer¹

Division of Medical Genetics, Department of Pediatrics [J. I.], Division of Gynecologic Oncology, Department of Obstetrics and Gynecology [S. B., D. M., T. H., J. R.], Section of Endocrine and Oncologic Surgery, Department of Surgery [P. G.], Section of Medical Genetics, Department of Internal Medicine [A. W.], Washington University School of Medicine, St. Louis, Missouri 63110

Family history data are critical in the study of hereditary cancer syndromes and the identification of cancer modifier genes.

Purpose: The purpose of this study was to analyze the process for collecting and verifying reported cancer family histories and identify reporting inaccuracies among a series of women with endometrial cancer.

Experimental Design: Detailed family histories were obtained from 80 women enrolled in a research study. Medical records were collected to verify cancer reporting.

Results: Participants reported 289 cancers among themselves and 2925 first-, second-, and third-degree relatives. There was a significant relationship between the number of telephone contacts made with each participant and the fraction of records retrieved from hospitals (² = 23.68, d.f. = 7, P = 0.001). Medical records were retrieved for 102 of 289 (35%) reported cancers and 10 additional cancers, not initially reported by participants. Medical records were more likely to be retrieved if the relative with cancer was living, closely related to the study participant, and the cancer type was known. The success in retrieving medical records declined with increasing record age (² = 35.07, d.f. = 5, P < 0.001). Thirty-two of the 112 (28.6%) verified cancers were identified to be inaccurately reported, with a significantly higher number of inaccurate reports among second- and third-degree relatives than first-degree relatives (P = 0.02). Two participants, who did not accurately report their cancer family history, had an increase in their family-based risk assessment after medical record collection.

Conclusions: Additional studies to improve record collection efficiency and identify cancer reporting accuracy are needed among general research populations.