Quality of cancer family history and referral for genetic counseling and testing among oncology practices: A pilot test of quality measures as part of the ASCO Quality Oncology Practice Initiative (QOPI).

Abstract

CRA1505 Background: The cancer family history (CFH) is an important tool for identification of individuals for genetic counseling/testing (GC/GT). Prior studies demonstrate a low rate of family history documentation and low referral rates for genetic counseling and genetic testing. Methods: In 2011ASCO began pilot testing new measures in QOPI to evaluate the practice of family history taking and referral for genetic counseling/testing in patients with either breast cancer (BC) or colorectal cancer (CRC). The measures assessed the presence or absence of CFH in 1st/2nd degree relatives, age at cancer diagnosis, referral for GC/GT and outcomes of referral. Results: Between September and October 2011 272 practices pilot tested these measures and reported on 10,466 patients (BC 6569, CRC 3897). 77.4% of all charts reviewed documented presence or absence of CFH in 1st degree relatives (BC 81.2% (CI 80-82%), CRC 77.4% (CI 76-79%), p= <0.001) and 61.5% of charts documented presence or absence of CFH in 2nd degree relatives (BC 68.9% (CI 68-70%), CRC 57.3% (CI 56-59%) p=<0.001). Age at diagnosis was documented for all relatives with cancer in 30.7% of charts (BC 45.2% (CI 44-47%), CRC 35.4% (CI 34-37%) p=<0.001). Patients were referred for GC/GT in 22.1% of all charts reviewed (BC 29.1% (CI 28-30%), CRC 19.6% (CI, 18-21%) p=<0.001). Of patients with hereditary risk (defined by selected risk guidelines) 52.2% of BC and 26.4% CRC were referred for GC/GT. When genetic testing was performed by the practice consent was documented 77.7% of the time and discussion of results was documented 78.8% of the time. Conclusions: Appropriate referral for GC/GT requires a complete and accurate CFH. In this pilot testing of QOPI measures we identified a higher quality of CFH information than expected though with room for improvement. Significant differences were seen between BC and CRC charts with greater accuracy of CFH and higher referral rates among BC patients. To obtain improvement in the identification and management of patients at high risk, significant improvements are needed. Education is part of the answer.

Underutilization of Lynch syndrome screening in a multisite study of patients with colorectal cancer

“…In order to be informative for LS, a family history should document any history of LS associated cancers beyond CRC and include the cancer type, relative affected (including the lineage), and the age at diagnosis. Like Wood, 28 we found sufficient information to assess for LS risk in two-thirds of charts, and 67% of the charts with a positive cancer history included enough information indicating LS risk based on Amsterdam II or revised Bethesda criteria. Of those individuals we could not assess, the charts frequently lacked age at diagnosis information for relatives with a LS associated cancer.…”

Evaluation of a Heredofamilial Cancer Unit in Increasing Family History Collection and Genetic Counseling Referrals Among Spanish Oncologists at a University Hospital

“…Recently, the results of a pilot study were presented at the ASCO (American Society of Clinical Oncology) 2012 meeting, as part of the ASCO/quality oncology practice initiative (QOPI). In that study, more than 10,000 patient records, all for breast and colon cancer patients, were retrospectively analyzed, and a 77 % FHR rate was detected (Wood et al 2012). Our global results are still lower than these latter rates,…”

“…Additionally, not every oncologist reports FH in their clinical records. One recent study, the Quality Oncology Practice Initiative (QOPI) lead by the American Society of Clinical Oncology, found that 23 % of records lacked family history, and almost half of high risk patients were not referred to GC (Wood et al 2012) Thus, several clinical guidelines have been published with easy-to-manage general criteria to facilitate an initial indication for further referral to genetic counseling (GC). The National Cancer Institute (NCI) general criteria for hereditary cancer indicators are considered one of the most wellknown published cancer clinical guidelines.…”

Identification, Evaluation, and Treatment of Patients with Hereditary Cancer Risk within the United States

“…However, only 33% reported that they take a full, three-generation pedigree [ 23 ], which is needed to perform a risk assessment per standard of care guidelines [ 24 , 25 ]. Thus, it is not surprising that studies to assess provider collection of family history based on chart reviews have suggested a lack of information to adequately assess risk in a substantial number of charts [ 26 , 27 ]. Specifically, review of ambulatory medical records of 734 family practice patients indicated documentation of family history of cancer in 97.8% of records; however there was insufficient information to adequately assess hereditary cancer risk in over 2/3 of charts [ 26 ].…”