Interdisciplinary psychosocial care for families with inherited cardiovascular diseases

Colleen Caleshu; Nadine A Kasparian; Katharine S Edwards; Laura Yeates; Christopher Semsarian; Marco Perez; Euan Ashley; Christian J Turner; Joshua W Knowles; Jodie Ingles

doi:10.1016/j.tcm.2016.04.010

Interdisciplinary psychosocial care for families with inherited cardiovascular diseases

Trends Cardiovasc Med. 2016 Oct;26(7):647-53. doi: 10.1016/j.tcm.2016.04.010. Epub 2016 Apr 28.

Affiliations

¹ Stanford Center for Inherited Cardiovascular Disease and Stanford Cardiovascular Institute, Stanford, CA.
² 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.
³ 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.
⁴ Heart Centre for Children, The Sydney Children's Hospitals Network (Westmead and Randwick), Sydney, New South Wales, Australia.
⁵ 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.

PMID: 27256036
DOI: 10.1016/j.tcm.2016.04.010

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.

Keywords: Genetic testing; Hypertrophic cardiomyopathy; Psychological wellbeing; Quality of life.

Publication types

Review
Research Support, Non-U.S. Gov't

MeSH terms

Adaptation, Psychological
Cardiovascular Diseases / diagnosis
Cardiovascular Diseases / genetics
Cardiovascular Diseases / psychology
Cardiovascular Diseases / therapy*
Cooperative Behavior
Cost of Illness
Death, Sudden, Cardiac / etiology*
Death, Sudden, Cardiac / prevention & control
Delivery of Health Care, Integrated / methods*
Family Relations
Genetic Counseling*
Genetic Predisposition to Disease
Grief
Humans
Interdisciplinary Communication
Mental Health*
Patient Care Team*
Patient Compliance
Phenotype
Psychotherapy / methods*
Quality of Life