Universal tumor screening for Lynch syndrome: Perceptions of Canadian pathologists and genetic counselors of barriers and facilitators

Abstract

Background People at risk of developing hereditary cancers associated with Lynch Syndrome (LS) can be identified through universal screening of colorectal tumors. However, tumor screening practices are variable across Canada and few studies explore the perspectives of genetic counselors and pathologists about tumor screening. This study was conducted to better understand the barriers and facilitators of implementing universal tumor screening in health centers across Canada. Methods An online survey about tumor screening programs was administered to genetic counselors and pathologists across Canada through communication channels of professional organizations. It was hosted on SurveyMonkey and accessible from October 2016 to March 2017. Results Barriers to tumor screening included a lack of sustainable resources, including funding and genetic counselors. Respondents strongly identified the need for a coordinated, interdisciplinary approach to program planning with the “right people at the table.” Respondents currently with a screening program provided advice such as carefully designing the program structure, developing patient and family follow‐up protocols, and ensuring adequate resources (funding, staff, training for providers) were available prior to program initiation. Conclusion There is no national approach to universal tumor screening in Canada. However, future efforts can be informed by the experiences of those centers that have already created a universal tumor screening program for LS. These data suggest the need for an interdisciplinary approach, initial and sustained funding, and careful advanced planning of program structures and policies.

Distinct clinical phenotype and genetic testing strategy for Lynch syndrome in China based on a large colorectal cancer cohort

“…Although our study has systematically evaluated the clinicopathologic characteristic and molecular testing strategy available in a single institution in China, how to implement this screening process extensively among general clinical centers in real world in China is very challenging and complex. There are still a series of impediments, such as genetic testing costs, poor understanding of LS, lack of multidisciplinary collaboration, genetic counseling, patient education, which need to be dissolved gradually in future as proposed in previous studies …”

Effective Identification of Lynch Syndrome in Gastroenterology Practice

“…Population-based studies have demonstrated that universal tumor testing is performed less often in underserved and minority patients, suggesting that these groups are disproportionately affected by geographic and practice-based variation in performance of tumor testing [ 67 , 68 , 70 ]. Frequently cited barriers to implementation of universal tumor testing include unfamiliarity with guidelines, concerns about cost, lack of laboratory or genetics services, inadequate stakeholder involvement, and absence of a universal testing “champion” or a designated department that claims responsibility for the universal testing program [ 71 – 73 ]. With these challenges in mind, concerted multi-disciplinary public health efforts are needed to overcome these barriers and optimize implementation of universal testing on a large scale [ 59 ].…”

Integrating Tumor Sequencing Into Clinical Practice for Patients With Mismatch Repair-Deficient Lynch Syndrome Spectrum Cancers

“…This approach could overcome the complexity of current testing algorithms that often involve iterative testing and multiple care providers. The current costs of sequencing may prevent universal integration in public healthcare systems due to the limited funding, availability of laboratory, clinical and genetic counseling personnel, and lack of consensus guidelines among regional health authorities ( 32 , 33 ). However, incorporating tumor sequencing secondary to germline genetic testing for Lynch syndrome would allow its efficient integration into existing testing algorithms.…”