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

November 2020 Vol 11, No 11
Kathryn A. Pratt, BSN, RN, OCN, CBCN
Harold C. Simmons Comprehensive Cancer Center
University of Texas Southwestern Medical Center
Dallas, TX
Sayoni Lahiri, MS, CGC
The University of Texas Southwestern Medical Center,
Dallas, TX
Sara Pirzadeh-Miller, MS, CGC
The University of Texas Southwestern Medical Center,
Dallas, TX
Parker Read, MS, CGC
The University of Texas Southwestern Medical Center,
Dallas, TX

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.


  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.
  4. Li X, You R, Wang X, et al. Effectiveness of prophylactic surgeries in BRCA1 or BRCA2 mutation carriers: a meta-analysis and systematic review. Clin Cancer Res. 2016;22:3971-3981.
  5. Finch AP, Lubinski J, Møller P, et al. Impact of oophorectomy on cancer incidence and mortality in women with a BRCA1 or BRCA2 mutation. J Clin Oncol. 2014;32:1547-1553.
  6. Rebbeck TR, Kauff ND, Domcheck SM. Meta-analysis of risk reduction estimates associated with risk-reducting salpingo-oophorectomy in BRCA1 or BRCA2 mutation carriers. J Natl Cancer Inst. 2009;101:80-87.
  7. Kauff ND, Domchek SM, Friebel TM, et al. Risk-reducing salpingo-oophorectomy for the prevention of BRCA1- and BRCA2-associated breast and gynecologic cancer: a multicenter, prospective study. J Clin Oncol. 2008;26:1331-1337.
  8. Brenner H, Chang-Claude J, Jansen L, et al. Reduced risk of colorectal cancer up to 10 years after screening, surveillance, or diagnostic colonoscopy. Gastroenterology. 2014;146:709-717.
  9. Jacob BJ, Moineddin R, Sutradhar R, et al. Effect of colonoscopy on colorectal cancer incidence and mortality: an instrumental variable analysis. Gastrointest Endosc. 2012;76:355-364.
  10. Kahi CJ, Imperiale TF, Juliar BE, Rex DK. Effect of screening colonoscopy on colorectal cancer incidence and mortality. Clin Gastroenterol Hepatol. 2009;7:770-775.
  11. Nishihara R, Wu K, Lochhead P, et al. Long-term colorectal-cancer incidence and mortality after lower endoscopy. N Engl J Med. 2013;369:1095-1105.
  12. Pratt KA. Impact of genetic patient navigation to facilitate hereditary mutation carriers comply with NCCN management guidelines and to enable healthy behaviors. Journal of Oncology Navigation & Survivorship. 2019;10(11):442-443.
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