title: Interdisciplinary psychosocial care for families with inherited cardiovascular diseases.
abstract: Inherited cardiovascular diseases pose unique and complex psychosocial challenges for families, including coming to terms with life-long cardiac disease, risk of sudden death, grief related to the sudden death of a loved one, activity restrictions, and inheritance risk to other family members. Psychosocial factors impact not only mental health but also physical health and cooperation with clinical recommendations. We describe an interdisciplinary approach to the care of families with inherited cardiovascular disease, in which psychological care provided by specialized cardiac genetic counselors, nurses, and psychologists is embedded within the cardiovascular care team. We report illustrative cases and the supporting literature to demonstrate common scenarios, as well as practical guidance for clinicians working in the inherited cardiovascular disease setting.
authors.affiliation: Stanford Center for Inherited Cardiovascular Disease and Stanford Cardiovascular Institute, Stanford, CA.
authors.forename: Colleen
authors.initials: C
authors.lastname: Caleshu
authors.affiliation: Heart Centre for Children, The Sydney Children's Hospitals Network (Westmead and Randwick), Sydney, New South Wales, Australia; Discipline of Pediatrics, School of Women's and Children's Health, UNSW Medicine, The University of New South Wales, Sydney, New South Wales, Australia.
authors.forename: Nadine A
authors.initials: NA
authors.lastname: Kasparian
authors.affiliation: Stanford Center for Inherited Cardiovascular Disease and Stanford Cardiovascular Institute, Stanford, CA.
authors.forename: Katharine S
authors.initials: KS
authors.lastname: Edwards
authors.affiliation: Agnes Ginges Centre for Molecular Cardiology, Centenary Institute, Locked Bag 6, Newtown, Sydney, New South Wales, Australia; Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia; Department of Cardiology, Royal Prince Alfred Hospital, Sydney, New South Wales, Australia.
authors.forename: Laura
authors.initials: L
authors.lastname: Yeates
authors.affiliation: Agnes Ginges Centre for Molecular Cardiology, Centenary Institute, Locked Bag 6, Newtown, Sydney, New South Wales, Australia; Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia; Department of Cardiology, Royal Prince Alfred Hospital, Sydney, New South Wales, Australia.
authors.forename: Christopher
authors.initials: C
authors.lastname: Semsarian
authors.affiliation: Stanford Center for Inherited Cardiovascular Disease and Stanford Cardiovascular Institute, Stanford, CA.
authors.forename: Marco
authors.initials: M
authors.lastname: Perez
authors.affiliation: Stanford Center for Inherited Cardiovascular Disease and Stanford Cardiovascular Institute, Stanford, CA.
authors.forename: Euan
authors.initials: E
authors.lastname: Ashley
authors.affiliation: Heart Centre for Children, The Sydney Children's Hospitals Network (Westmead and Randwick), Sydney, New South Wales, Australia.
authors.forename: Christian J
authors.initials: CJ
authors.lastname: Turner
authors.affiliation: Stanford Center for Inherited Cardiovascular Disease and Stanford Cardiovascular Institute, Stanford, CA.
authors.forename: Joshua W
authors.initials: JW
authors.lastname: Knowles
authors.affiliation: Agnes Ginges Centre for Molecular Cardiology, Centenary Institute, Locked Bag 6, Newtown, Sydney, New South Wales, Australia; Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia; Department of Cardiology, Royal Prince Alfred Hospital, Sydney, New South Wales, Australia. Electronic address: j.ingles@centenary.org.au.
authors.forename: Jodie
authors.initials: J
authors.lastname: Ingles
mesh_terms: D000223:Adaptation, Psychological; D002318:Cardiovascular Diseases / Q000175:diagnosis / Q000235:genetics / Q000523:psychology / Q000628:therapy*; D003299:Cooperative Behavior; D017281:Cost of Illness; D016757:Death, Sudden, Cardiac / Q000209:etiology* / Q000517:prevention & control; D019033:Delivery of Health Care, Integrated / Q000379:methods*; D005195:Family Relations; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D006117:Grief; D006801:Humans; D033183:Interdisciplinary Communication; D008603:Mental Health; D010348:Patient Care Team; D010349:Patient Compliance; D010641:Phenotype; D011613:Psychotherapy / Q000379:methods*; D011788:Quality of Life
keywords: Genetic testing; Hypertrophic cardiomyopathy; Psychological wellbeing; Quality of life