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Patient uptake and satisfaction with genetic counseling service delivery models in adults with retinal dystrophies

Brzozowski, Morgan Rae (2023) Patient uptake and satisfaction with genetic counseling service delivery models in adults with retinal dystrophies. Master's Thesis, University of Pittsburgh. (Unpublished)

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Genetic counseling services are essential to achieve the highest quality care management in adults with retinal dystrophies. The retinal dystrophy clinic housed within the University of Pittsburgh Medical Center (UPMC) provides the option of genetic counseling and testing to all patients through in-person and remote telemedicine options. While various genetic counseling service delivery models have been established, there is little known about satisfaction with the appointment types for patients that have a confirmed or suspected retinal dystrophy. Thirty-five patients were seen for pre-test genetic counseling between October 3, 2022 and February 6, 2023. Patients self-selected one of the following four appointment types: in-person in-coordination with another appointment in the department, in-person genetic counseling only, telemedicine video genetic counseling only or telemedicine phone genetic counseling only. All patients were contacted within one week of completing their appointment with an invitation to participate in a satisfaction survey consisting of the Genetic Counseling Satisfaction Scale (GCSS) and independently developed questions. The majority of patients completed genetic counseling in-coordination with another appointment (N =15) or via telemedicine video (N =14). Eighteen individuals completely the survey, for a response rate of 51.4% (18/35). The results suggest that patients were highly satisfied with genetic counseling regardless of service delivery model. There was no significant difference in uptake of service delivery model and/or satisfaction between respondents that did and did not meet the criteria for legal blindness, meeting a tenant of public health by providing equitable care. This study demonstrates that telemedicine genetic counseling is an acceptable service delivery model for adults with confirmed or suspected retinal dystrophies. Genetic counseling should continue to be offered in-person and via telemedicine to help ensure that all patients have the ability to access care by their preferred appointment type.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Brzozowski, Morgan Raemrb132@pitt.edumrb132
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairAlabek,
Committee MemberVento, JodieVENTOJM@pitt.eduVENTOJM
Committee MemberWilliams,
Date: 15 May 2023
Date Type: Publication
Defense Date: 20 April 2023
Approval Date: 15 May 2023
Submission Date: 27 April 2023
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 45
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: Genetic counseling satisfaction, ophthalmology, telemedicine
Date Deposited: 15 May 2023 20:15
Last Modified: 15 May 2023 20:15


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