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Alternate Genetic Services Delivery Models for Individuals with Pancreatic Cancer: An Investigation of Patient Reported Knowledge and Distress Levels

Drogan, Christine (2020) Alternate Genetic Services Delivery Models for Individuals with Pancreatic Cancer: An Investigation of Patient Reported Knowledge and Distress Levels. Master's Thesis, University of Pittsburgh. (Unpublished)

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Abstract

An estimated 57,600 people in the United States will be diagnosed with pancreatic ductal adenocarcinoma (PDAC) in 2020. Efforts in the age of precision medicine focus on early detection and tailored treatments, of which germline genetic testing is a vital component. An estimated 10% of individuals with PDAC have a germline pathogenic variant. Increased risk of PDAC can be observed in multiple hereditary predisposition cancer syndromes, which have implications for a patient and their family members. Affected mutation carriers may have longer survival when treated with platinum-based therapies, PARP inhibitors, and anti-PD1 therapy. Unaffected mutation carriers may benefit from high-risk imaging surveillance protocols. These medical management implications make genetic testing for individuals with PDAC and their family members an important public health initiative. As such, national professional groups have recommended all PDAC patients have a genetics evaluation ideally conducted by a genetics professional; however, due to the genetic counselors shortage, exploration of alternative methods of service delivery is necessary to increase accessibility. In January 2020, the University of Pittsburgh Medical Center (UPMC) implemented a 5-minute educational video tailored to individuals with PDAC to increase germline testing access. This pilot study aimed to evaluate the effect of two delivery modes on participant knowledge and distress levels: an abbreviated genetic counseling session with a licensed and certified genetic counselor, or the educational video. Genetic literacy was evaluated prior to genetics education. Knowledge was measured immediately following education. For individuals who underwent genetic testing, knowledge assessment was repeated 2 weeks after results disclosure; a questionnaire (MICRA) that assesses the impact of genetic testing results on distress was also administered at the post-disclosure timepoint. Due to the small sample size, nonparametric tests were used (n=14). Knowledge and distress levels were compared between educational groups and were found to be not significantly different, indicating that video education provides timely genetic testing access to patients with PDAC without compromising educational value or causing undue distress. Understanding knowledge acquisition and distress among participants undergoing video genetic education may inform future alternative service delivery models, which in turn affects public health initiatives in genetic services.


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Details

Item Type: University of Pittsburgh ETD
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Drogan, Christinecmd173@pitt.educmd173
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairDudley, R. Beth
Committee MemberBrand, Randall
Committee MemberGrubs, Robin
Committee MemberMai, Phuong
Committee MemberShaffer, John
Date: 30 July 2020
Date Type: Publication
Defense Date: 14 April 2020
Approval Date: 30 July 2020
Submission Date: 31 March 2020
Access Restriction: 2 year -- Restrict access to University of Pittsburgh for a period of 2 years.
Number of Pages: 88
Institution: University of Pittsburgh
Schools and Programs: Graduate School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: pancreatic adenocarcinoma; genetics; pathogenic variant; knowledge; distress; genetic literacy
Date Deposited: 30 Jul 2020 18:16
Last Modified: 30 Jul 2020 18:16
URI: http://d-scholarship.pitt.edu/id/eprint/38787

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