Recontacting patients for multigene panel testing in hereditary cancer: Efficacy and insights

Abstract

In hereditary cancer, multigene panel testing is currently replacing older single‐gene approaches. Patients whose tests were previously uninformative could benefit from updated testing. Research suggests that patients desire to be recontacted about updated genetic testing, but few studies have tested the efficacy of recontact efforts. This study investigated the outcomes of a recontact effort in a hereditary cancer clinic and explored the impact of four different recontact letters, randomized in a 2X2 factorial design. Patients who had negative genetic testing for single genes or conditions were mailed letters inviting them to schedule an appointment to discuss updated testing. Patients were randomized to receive one of four letters and each letter emphasized different implications of updated multigene genetic testing: (a) personal medical management implications, (b) implications for family members, (c) both personal and family implications or (d) a control letter. The proportion of patients who arrived for appointments was assessed approximately 7 months after mailing along with associations with patient demographics and type of letter received. Letters were mailed to 586 patients who had initial testing between 2001 and 2015. Most patients were white (78%) and female (97%) with private insurance (65%). At 7 months, 25 patients (4.3%, 95% CI: 2.6% to 5.9%) had arrived for an appointment. Older age was significantly associated with response rate (p = .01), while type of recontact letter was not (p = .54). This study suggests that recontacting patients about updated genetic testing by mail does not yield a large response. It also suggests that personal and/or familial implications do not seem to be significant factors that determine response rate. Nevertheless, results provide meaningful information for cancer clinics about the outcomes of recontact efforts via informational letter.

Uptake of genetic counseling and multi‐gene panel testing among women in the Intermountain West with previous negative BRCA1 and BRCA2 results contacted for updated testing

“…Genetic science, genetic testing, and testing recommendations are rapidly advancing for patients with a personal or family history of cancer. There is growing interest in offering multi‐gene panel testing for people who previously had limited testing and were negative for BRCA1/2 (Hampel, 2009; Sawyer et al., 2019). While it requires additional effort for genetic counseling clinics to re‐contact prior patients, it provides patients with continuing information about their genetic risks, adding new information about actionable findings, or providing reassurance about negative results.…”

“…Of the 412 patients who were found to be eligible for the study, 27% scheduled a counseling appointment and 21% received genetic testing. Prior research studies that re‐contacted cancer patients in different patient populations have yielded between 3.8% and 8.5% of participants undergoing updated testing (Hampel, 2009; Romero Arenas et al, 2018; Sawyer et al., 2019). There may be differences in uptake of updated testing across studies for several reasons.…”

“…In a more recent study, Sawyer et al. (2019) sent letters to patients who had had previous BRCA1/2 genetic testing and found that 4.3% of participants attended a follow‐up genetic counseling appointment after being re‐contacted. In another recent study, participants with medullary thyroid carcinoma, pheochromocytoma, or paraganglioma were re‐contacted about updated genetic testing.…”

Impact of changing guidelines on genetic testing and surveillance recommendations in a contemporary cohort of breast cancer survivors with family history of pancreatic cancer

“…Current NCCN guidelines have shifted to recommend consideration of multi-gene panel testing both as a first line test, and for patients previously negative for BRCA1 / 2 24 . Genetics providers have attempted re-contact of patients via mail to notify them of updated testing, but subsequent test uptake has been very low 47 , 48 . Integrating genetic services into cancer survivorship care could help to bridge this gap, and has shown efficacy in a pediatric survivor clinic setting 49 .…”

Impact of Changing Guidelines on Genetic Testing and Surveillance Recommendations in a Contemporary Cohort of Breast Cancer Survivors with Family History of Pancreatic Cancer

“…Current NCCN guidelines recommend consideration of multi-gene panel testing both as a rst line test, and for patients previously negative for BRCA1/2 24 . Genetics providers have attempted re-contact of patients via mail to notify them of updated testing, but subsequent test uptake has been very low 42,43 . Integrating genetic services into cancer survivorship care could help to bridge this gap, and has shown e cacy in a pediatric survivor clinic setting 44 .…”