Article
European Journal of Human Genetics advance online publication 10 September 2014; doi: 10.1038/ejhg.2014.180
A systematic review of factors that act as barriers to patient referral to genetic services
- 1Faculty of Health and Human Sciences, Plymouth University, Plymouth, UK
- 2Clinical Genetics Clinic, The Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus
Correspondence: T Delikurt, Clinical Genetics Clinic, The Cyprus Institute of Neurology and Genetics, PO Box 23462, 1683 Nicosia, Cyprus. Tel: +357 22392740; Fax: +357 22392786; E-mail:turem.delikurt@plymouth.ac.uk
Received 14 February 2014; Revised 23 July 2014; Accepted 7 August 2014
Advance online publication 10 September 2014
Advance online publication 10 September 2014
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Abstract
Patients who might benefit from genetic services may be denied access through failure to be referred. To investigate the evidence on barriers to referral to genetic services, we conducted a systematic review of empirical evidence on this topic. Nine studies were included in the review. Barriers related to non-genetic healthcare professionals were: lack of awareness of patient risk factors, failure to obtain adequate family history, lack of knowledge of genetics and genetic conditions, lack of awareness of genetic services, inadequate coordination of referral and lack of genetics workforce. Those related to individuals affected by or at risk of a genetic condition were: lack of awareness of personal risk, lack of knowledge and/or awareness of medical history of family members and lack of knowledge of genetic services. Research on access to genetic services is heterogeneous; stronger empirical evidence is needed on factors that are barriers, and further research is needed to develop ‘targeted interventions’ for equitable access to genetic services in a range of populations.
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