Date of Award

5-2019

Document Type

Thesis - Open Access

Degree Name

MS Human Genetics

Department

Human Genetics Graduate Program

Abstract

Predictive testing for HD creates a potentially significant psychological burden on patients and their families, and in turn, the emotional strain of working with at-risk individuals may take a toll on providers. Protocols have been established by the HDSA that emphasize the importance of genetic counseling and support for individuals undergoing testing. Recently, the HDSA’s guidelines have switched from recommending a 3-visit protocol to a 2-visit protocol. Little is known about the effect of this change on genetic service providers, their practice, their perception of the patient experience, or the impact of their choice of protocol in terms of the burden on providers. This study examined the impact of such testing from the provider’s perspective. Providers involved in the HD predictive testing process at 43 Centers of Excellence across the country were invited to participate in a survey examining protocol use and emotional burden. Of the 54 respondents, 37% reported changing their protocol in light of the HDSA’s recommendations while 33% reported always having used the 2-visit protocol. Almost half (48%, n=26/54) of providers reported having feelings of emotional burden related to their work with predictive testing; the most frequent causes being “emotional overextension” and “exhaustion.” There was no difference in the emotional burden reported by providers who made the protocol switch and providers who did not. This study provides evidence that a 2-visit protocol for HD predictive testing has been widely adopted by practicing providers, and that many providers switched in response to the HDSA’s update to their guidelines. Results also suggest that there is a high emotional burden related to this type of work, regardless of the type of protocol used.

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