Comparison of a Focused Family Cancer History Questionnaire to Family History Documentation in the Electronic Medical Record

Abstract

Introduction: Family health history can be a valuable indicator of risk to develop certain cancers. Unfortunately, patient self-reported family history often contains inaccuracies, which might change recommendations for cancer screening. We endeavored to understand the difference between a patient’s self-reported family history and their electronic medical record (EMR) family history. One aim of this study was to determine if family history information contained in the EMR differs from patient-reported family history collected using a focused questionnaire. Methods: We created the Hereditary Cancer Questionnaire (HCQ) based on current guidelines and distributed to 314 patients in the Department of Family Medicine waiting room June 20 to August 1, 2018. The survey queried patients about specific cancers within their biological family to assess their risk of an inherited cancer syndrome. We used the questionnaire responses as a baseline when comparing family histories in the medical record. Results: Agreement between the EMR and the questionnaire data decreased as the patients’ risk for familial cancer increased. Meaning that the more significant a patient’s family cancer history, the less likely it was to be recorded accurately and consistently in the EMR. Patients with low-risk levels, or fewer instances of cancer in the family, had more consistencies between the EMR and the questionnaire. Conclusions: Given that physicians often make recommendations on incomplete information that is in the EMR, patients might not receive individualized preventive care based on a more complete family cancer history. This is especially true for individuals with more complicated and significant family history of cancer. An improved method of collecting family history, including increasing patient engagement, may help to decrease this disparity.

Genetic counseling and genetic testing for pathogenic germline mutations among high-risk patients previously diagnosed with breast cancer: a traceback approach

“…In fact, only 14 (0.6%) of the eligible patients were identified based on family history records alone. This observation presents yet another example to the importance of comprehensive noting and regular review of cancer patients' family history records 51 .…”

Enhancing patient representation learning from electronic health records through predicted family relations

“…One reason for this is that family histories are not systematically recorded in EHR databases. Family-related information is largely captured via survey or active questioning by healthcare professionals 9 and stored in EHRs as free text or scanned documents, limiting its usability in healthcare research 10 .…”

“…One reason for this is that family histories are not systematically recorded in EHR databases. Family-related information is largely captured via survey or active questioning by healthcare professionals 9 and stored in EHRs as free text or scanned documents, limiting its usability in healthcare research 10 . For this reason, several rule-based algorithms have recently been developed for inferring electronic family pedigrees (e-pedigrees) from EHR data 11-13 .…”