Psychosocial Implications of Living with Catecholaminergic Polymorphic Ventricular Tachycardia in Adulthood.
Full text not available from this repository.Item Type: | Article |
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Status: | Published |
Official URL: | https://doi.org/10.1007/s10897-017-0152-1 |
Journal or Publication Title: | Journal of Genetic Counseling |
Volume: | 27 |
Number: | 3 |
Page Range: | pp. 549-557 |
Date: | 2018 |
Divisions: | Cardio Genomics Molecular Cardiology |
Depositing User: | General Admin |
Identification Number: | 10.1007/s10897-017-0152-1 |
ISSN: | 1059-7700 |
Date Deposited: | 03 Jan 2021 23:22 |
Abstract: | Catecholaminergic polymorphic ventricular tachycardia (CPVT) is a rare inherited arrhythmogenic disease with a high risk of sudden cardiac death. The impact on health-related quality of life (HR-QoL) and psychosocial outcomes is not known. We sought to provide the first description of HR-QoL and psychosocial wellbeing of adults with CPVT, parents of affected children and at-risk relatives. Participants were recruited through the Australian Genetic Heart Disease Registry and invited to complete a cross-sectional survey comprising a number of validated scales and open-ended questions. Thirty-five participants completed surveys (response rate 65%), including 19 with CPVT, 10 unaffected parents of a child with CPVT, and 7 at-risk relatives (one participant considered patient and parent). Young patients <40 years were significantly more likely to report anxiety (p = 0.04), depression (p = 0.03) and posttraumatic stress symptoms (p = 0.02) compared to older CPVT patients. Further, young patients with an implantable cardioverter defibrillator (ICD) reported significantly worse device-related distress (p = 0.04) and shock anxiety (p = 0.003). Patients with a genetic diagnosis had worse psychological adaptation than those patients without a gene result. Parents perceived their affected children to have poor quality of life across all subdomains compared to healthy age-matched children, however quality of life of parents and at-risk relatives was comparable to population norms. Ongoing psychosocial care is required for young people with CPVT. Those with an ICD and/or undergoing genetic testing may require additional support. The challenges of CPVT management should extend beyond the clinical and genetic aspects of care to incorporate greater psychosocial support, and further reinforces the need for a multidisciplinary approach to care. Keywords: CPVT; Genetics; Health-related quality of life; Psychosocial wellbeing. |
Creators: | Creators Email Richardson, Ebony UNSPECIFIED Spinks, Catherine UNSPECIFIED Davis, Andrew UNSPECIFIED Turner, Christian UNSPECIFIED Atherton, John UNSPECIFIED McGaughran, Julie UNSPECIFIED Semsarian, Christopher UNSPECIFIED Ingles, Jodie UNSPECIFIED |
Last Modified: | 03 Jan 2021 23:22 |
URI: | https://eprints.centenary.org.au/id/eprint/478 |
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