ArticleHaemophilia : the official journal of the World Federation of Hemophilia
Utilisation and Perceived Value of Genetic Counsellors Within US Haemophilia Treatment Centres.
Article in Haemophilia : the official journal of the World Federation of Hemophilia. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
introductionRapid advancement of molecular genetics has transformed the diagnosis, treatment, and management of individuals with hereditary bleeding disorders. To provide effective, up-to-date genetic counselling, navigate the complexity of these conditions, and select appropriate molecular testing, genetics expertise is required.
aimThis study assessed the provision of genetic counselling services, involvement of genetic counsellors (GCs), and the perceived value of GCs within haemophilia treatment centres (HTCs) in the United States.
methodsA survey was emailed to 396 HTC providers. Of these, 115 responses were received, representing 68 of 149 US HTCs (45.6% HTC participation rate). Responses were stratified by level of GC engagement.
resultsAlthough GCs have extensive training in genetics, genomics and counselling skills, nearly one-third of respondents (34.9%, n = 38) reported that a GC is not involved with the HTC nor are referrals made. Almost all GC-engaged respondents (98%, n = 22) and GC-referral respondents (95%, n = 20) agreed that 'GCs have a unique skill set that is highly valuable to an HTC clinic' compared to only 62% (n = 20) of non-GC-engaged respondents (p = 0.001). Additionally, respondents noted positive implications of integrating a GC within their HTCs, stating that GCs are 'ideal for optimal patient care'.
conclusionThese 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 provision of genetic counselling and increase healthcare equity.
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