Utilization and Perceived Value of Genetic Counselors Within U.S. Hemophilia Treatment Centers
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Authors
Carls, Caylynn
Issue Date
2021-05-01
Type
thesis_closed
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Keywords
Hemophilia treatment centers , genetic counseling , genetic counselors , genetic testing , multidisciplinary clinics , service delivery , Counseling
Genetics
Hematology
Molecular Genetics
Alternative Title
Human Genetics Theses
Abstract
Rapid advancement of molecular genetics has transformed the diagnosis, treatment, and management of individuals with hereditary bleeding disorders. To provide effective, up-to-date genetic counseling, navigate the complexity of these conditions, and select appropriate molecular testing, genetics expertise is required. This study assessed the provision of genetic counseling services, the involvement of genetic counselors (GCs), and the perceived value of GCs within hemophilia treatment centers (HTCs) in the United States. A survey was emailed to 396 HTC providers. 115 responses were received, representing 68 of 149 U.S. HTCs (45.6% HTC participation rate). Responses were stratified by level of GC engagement. Although GCs have extensive training in genetics, genomics, and counseling skills, nearly one-third (34.9%) of respondents reported that a GC is not involved with the HTC nor are referrals made. 98% of GC-engaged HTC respondents and 95% of GC-referrals agreed that “GCs have a unique skill set that is highly valuable to an HTC clinic” compared to only 62% of non-GC-engaged respondents (p= .001). Additionally, many respondents noted positive implications of integrating a GC within their HTCs, stating that GCs are “ideal for optimal patient care.” These results highlight the value of a GC within an HTC. This signifies the need to reassess the role of GCs among HTCs to reduce inconsistencies in the provision of genetic counseling and increase healthcare equity.
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