Please use this identifier to cite or link to this item: http://ahro.austin.org.au/austinjspui/handle/1/18685
Title: Outcomes of a randomised controlled trial of a complex genetic counselling intervention to improve family communication.
Authors: Hodgson, Jan;Metcalfe, Sylvia;Gaff, Clara;Donath, Susan;Delatycki, Martin B;Winship, Ingrid;Skene, Loane;Aitken, MaryAnne;Halliday, Jane
Affiliation: Public Heath Genetics, Murdoch Childrens Research Institute, Royal Children's Hospital, Parkville, Victoria, Australia
Melbourne Law School, University of Melbourne, Parkville, Victoria, Australia
Research Office, La Trobe University, Melbourne, Victoria, Australia
Genetics Education and Health Research, Murdoch Childrens Research Institute, Royal Children's Hospital, Parkville, Victoria, Australia
Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia
Murdoch Childrens Research Institute, Royal Children's Hospital, Parkville, Victoria, Australia
Department of Medicine, University of Melbourne, Parkville, Victoria, Australia
Clinical Epidemiology and Biostatistics Unit, Murdoch Childrens Research Institute, Royal Children's Hospital, Parkville, Victoria, Australia
Department of Clinical Genetics, Austin Health, Heidelberg, Victoria, Australia
Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Royal Children's Hospital, Parkville, Victoria, Australia
Genetic Medicine, Royal Melbourne Hospital, Parkville, Victoria, Australia
Issue Date: Mar-2016
EDate: 2015-07-01
Citation: European journal of human genetics : EJHG 2016; 24(3): 356-360
Abstract: When an inherited genetic condition is diagnosed in an individual it has implications for other family members. Privacy legislation and ethical considerations can restrict health professionals from communicating directly with other family members, and so it is frequently the responsibility of the first person in a family to receive the diagnosis (the proband) to share this news. Communication of genetic information is challenging and many at-risk family members remain unaware of important information that may be relevant to their or their children's health. We conducted a randomised controlled trial in six public hospitals to assess whether a specifically designed telephone counselling intervention improved family communication about a new genetic diagnosis. Ninety-five probands/parents of probands were recruited from genetics clinics and randomised to the intervention or control group. The primary outcome measure was the difference between the proportion of at-risk relatives who contacted genetics services for information and/or genetic testing. Audit of the family genetic file after 18 months revealed that 25.6% of intervention group relatives compared with 20.9% of control group relatives made contact with genetic services (adjusted odds ratio (OR) 1.30, 95% confidence interval 0.70-2.42, P=0.40). Although no major difference was detected overall between the intervention and control groups, there was more contact in the intervention group where the genetic condition conferred a high risk to offspring (adjusted OR 24.0, 95% confidence interval 3.4-168.5, P=0.001). The increasing sophistication and scope of genetic testing makes it imperative for health professionals to consider additional ways of supporting families in communicating genetic information.
URI: http://ahro.austin.org.au/austinjspui/handle/1/18685
DOI: 10.1038/ejhg.2015.122
PubMed URL: 26130486
Type: Journal Article
Randomized Controlled Trial
Research Support, Non-U.S. Gov't
Appears in Collections:Journal articles

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