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Mainstreaming Genetics: Evaluation of a digital application to scale and spread oncologist-initiated genetic testing

Health Services and Implementation
  • Primary Categories:
    • Health services and Implementation
  • Secondary Categories:
    • Health services and Implementation
Introduction:
Introduction: Genetic testing can alter therapy and surgical management for cancer patients and is indicated as a first-line test for many newly diagnosed patients, including breast, ovarian, pancreatic, prostate and colon/GI patients. To reduce pressure on constrained genetics clinics, some cancer centers are mainstreaming genetic testing, which means oncologists, instead of genetics experts, will order genetic testing without traditional pre-test genetic counseling; often using some form of paper-based patient pamphlets or a checklist. There is no standard, evidence-based approach to ‘mainstreaming’, leading to significant practice variation, lack of coordinated care and negative psychological impacts on patients. A digital health platform can address these gaps by providing a standardized, patient-centred approach to delivering cancer genetic counselling. We co-developed a prototype of the Mainstream Genetics Adviser building on our rigorously evaluated digital health application, the Genetics Adviser (www.geneticsadviser.com). The Mainstream Adviser, is an adaptable, patient-centred and facing digital mainstreaming platform for cancer genetics services. We aim to evaluate the effectiveness of the Mainstream Adviser in improving psychological outcomes and patient empowerment. We will also assess patient and provider experiences using and receiving results via the digital platform.

Methods:
Methods: A randomized controlled superiority trial followed by qualitative interviews. We plan to recruit English-speaking adults referred for mainstream genetic testing related to ovarian, pancreas, breast, prostate, or GI cancers as part of the standard-of-care practice. Patients with diminished or fluctuating decisional capacity or lacking access to electronic devices will not be eligible to participate. Participants will be randomized; the intervention group will use the Mainstream Adviser to support the delivery of their genetic testing, including education, pre-and post-test counselling, return of results and management recommendations. The Mainstream Adviser will serve as an adjunct to usual care. The control group will receive standard-of-care mainstreaming practice. Validated measures will be used to capture all outcomes. The primary outcome is generalized distress captured using the HADS scale. Secondary outcomes include decisional conflict, knowledge, anxiety, quality of life, intended and actual health behaviour change, and empowerment. Up to 160  participants (~80 per arm) will be recruited from two cancer genetics clinics: Sinai Health System and Sunnybrook Health Sciences Centre in Ontario, Canada. Data will be collected from both arms at four timepoints: i) baseline pre-randomization, ii) 2 weeks, iii) 3 months, and iv)1-year post-genetic testing. Data will be analyzed by calculating mean distress scores at 2-weeks post-testing using a t-test following the intention-to-treat approach. Exploratory analysis will evaluate differences between both arms on distress at various time points, and regressions will be used to assess the relationships between distress and clinical and sociodemographic variables. Sex and gender will be considered throughout.

Results:
Anticipated results: We anticipate the Mainstream Adviser will improve psychological outcomes and patient empowerment for cancer patients while enabling them to make decisions aligned with guideline-recommended care. We expect this digital health platform will improve service efficiency, coordinated care and patient-centred care while increasing the quality of patient decision-making.

Conclusion:
Significance: Innovative strategies for increasing the capacity and efficiency of genetic service delivery are needed. If done right, digital health applications can provide scalable solutions, supporting patients’ decisional needs, reducing psychological harms and improving patient empowerment and service efficiency. This research will generate a validated, novel patient-centred tool to support clinical delivery of genetic test results in oncology. Ultimately, this work is the first step to resolving the unfeasible demand on cancer genetic services through the creation of a mainstreaming model that can be scaled up across the country.

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