Abstract P3-08-09: Social media's impact on patient utilization of high-risk clinics for genetic counseling and testing services
Authors: Toltzis S , McHenry A , Stark E , Biagi T , Kaltman R 
Published: March 2017

Background: The availability and variety of cancer genetic testing services have grown tremendously in past years; testing services now offer panels that analyze more than 75 cancer susceptibility genes with results available in just weeks. Engaging the high-risk population in conversations regarding the importance of hereditary cancer screening is a prerequisite to initiating genetic testing and appropriate cancer surveillance. It has been shown that population awareness of cancer genetic testing has increased, but few studies have explored factors that contribute to actual uptake of these services.

Methods: A 36-question research survey was adapted from Cycle 3 of the 2014 Health Information National Trends Survey by NCI and distributed online to patients who received genetic counseling at the Ruth Paul Hereditary Cancer Program at the George Washington University Medical Faculty Associates. All patients who presented to the clinic, including those with and without cancer diagnoses, were invited to complete the survey. The survey was divided into four sections: (1) how the patient usually seeks health information, (2) how the patient has used media and the internet to understand cancer genetics, (3) how often the patient visits health professionals, and (4) why the patient pursued testing at the high-risk clinic.

Results: Forty-five out of 68 consented individuals completed the online survey. Most patients searched the internet regarding genetic testing in the past (64% vs. 36% who did not) but felt that they learned the most about cancer genetic testing through their health care provider and their family members/friends (49% and 35%, respectively). Though most patients access social networking sites (78%), only 4% shared information and 11% received information regarding cancer genetic testing through one of these sites. Most patients (65%) felt that information obtained from social media regarding cancer genetic testing had no impact on their decision to make an appointment. One-third of respondents (33%) felt that Angelina Jolie's decision to have prophylactic surgery for her known mutation encouraged them to make an appointment while 53% felt it had no impact on their decision. Most patients received a referral from their healthcare providers (91%) to have genetic testing, though 48% of those patients had to ask their doctor about genetic testing before receiving the referral.

Conclusions: Many patients use social media and internet resources for education regarding cancer genetic testing. However, most individuals sought genetic counseling services in our Hereditary Cancer Program after discussion with their health care providers. Half of those patients were only referred after raising the topic with their provider. While online resources can raise awareness and educate about cancer genetic counseling, improving uptake and utilization of these critical resources will require education of health care providers.

Citation Format: Toltzis S, McHenry A, Stark E, Biagi T, Kaltman R. Social media's impact on patient utilization of high-risk clinics for genetic counseling and testing services [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr P3-08-09.