title: Outcomes of a randomised controlled trial of a complex genetic counselling intervention to improve family communication.
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.
authors.affiliation: 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.
authors.forename: Jan
authors.initials: J
authors.lastname: Hodgson
authors.affiliation: 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.
authors.forename: Sylvia
authors.initials: S
authors.lastname: Metcalfe
authors.affiliation: 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.
authors.forename: Clara
authors.initials: C
authors.lastname: Gaff
authors.affiliation: Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia.|Clinical Epidemiology and Biostatistics Unit, Murdoch Childrens Research Institute, Royal Children's Hospital, Parkville, Victoria, Australia.
authors.forename: Susan
authors.initials: S
authors.lastname: Donath
authors.affiliation: 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.
authors.forename: Martin B
authors.initials: MB
authors.lastname: Delatycki
authors.affiliation: Department of Medicine, University of Melbourne, Parkville, Victoria, Australia.|Genetic Medicine, Royal Melbourne Hospital, Parkville, Victoria, Australia.
authors.forename: Ingrid
authors.initials: I
authors.lastname: Winship
authors.affiliation: Melbourne Law School, University of Melbourne, Parkville, Victoria, Australia.
authors.forename: Loane
authors.initials: L
authors.lastname: Skene
authors.affiliation: Murdoch Childrens Research Institute, Royal Children's Hospital, Parkville, Victoria, Australia.|Research Office, La Trobe University, Melbourne, Victoria, Australia.
authors.forename: MaryAnne
authors.initials: M
authors.lastname: Aitken
authors.affiliation: Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia.|Public Heath Genetics, Murdoch Childrens Research Institute, Royal Children's Hospital, Parkville, Victoria, Australia.
authors.forename: Jane
authors.initials: J
authors.lastname: Halliday
mesh_terms: D016022:Case-Control Studies; D003142:Communication; D005190:Family; D005260:Female; D005817:Genetic Counseling; D006801:Humans; D008297:Male; D008875:Middle Aged