Efficacy of an Electronic Survey to Establish Reconnection, Assessment of Clinical Compliance, and Provision of Resources for a Large Cohort of Hereditary Cancer Patients

Significance and Background: Individuals carrying germline mutations in genes associated with inherited cancer predisposition syndromes have significantly increased cancer risks. The National Comprehensive Cancer Network has published cancer risk management guidelines for mutation-positive patients and for cancer survivorship.^1-3 Compliance with screening and/or prophylactic surgical intervention is known to reduce cancer incidence.^4-11 Ongoing patient follow-up through oncology patient navigation is essential and has been shown to increase patient compliance and uptake of cancer survivorship.¹²

Purpose: The UT Southwestern Cancer Genetics Program implemented a genetic patient navigator (GPN) to assess patients’ barriers to care, assist patients in identifying resources to increase compliance, promote healthy lifestyle education, and assist with coordination of cascade testing for at-risk relatives. Making individual patient contacts, however, required more time than initially anticipated, thus leading to a smaller volume of patients contacted than expected. An electronic survey was developed as an alternative method to maximize reach and to analyze various metrics associated with this alternate tool to determine effectiveness.

Intervention: The intent of this study was to assess the feasibility of using an electronic HIPAA-compliant patient questionnaire to evaluate self-reported patient compliance and barriers to care with hereditary predisposition management guidelines. A survey was e-mailed in October 2019 to 784 mutation-positive patients for whom e-mail addresses were available; completed surveys were linked with a unique ID for each patient. Information attached to the survey included up-to-date hereditary predisposition management guidelines, healthy lifestyle resources, local survivorship program information, cascade testing, as well as GPN contact information.

Evaluation: Three attempts to contact patients (once every 2 weeks) were made via e-mail. Of 784 surveys sent, 36 (4.6%) were returned due to an invalid e-mail address. Of the remaining 748 questionnaires, 226 (30.2%) were completed. Seventy-six patients (33.6%) who completed questionnaires requested assistance with 136 genetic patient navigation services. An additional 32 surveys (4.3%) were partially completed or accessed only. Work is ongoing to assess compliance and activate GPN patient assistance.

Discussion/Innovation: Utilization of this innovative electronic initiative was successful in reaching a large number of our targeted population. The survey allowed for more efficient identification of patient compliance and needs, providing resources, and is allowing the GPN to focus her services in a more productive manner.

References

1. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic. Version 1.2020.
2. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Genetic/Familial High-Risk Assessment: Colorectal. Version 3.2019.
3. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Survivorship. Version 2.2019.
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