Journal article

Psychosocial Implications of Living with Catecholaminergic Polymorphic Ventricular Tachycardia in Adulthood

Ebony Richardson, Catherine Spinks, Andrew Davis, Christian Turner, John Atherton, Julie McGaughran, Christopher Semsarian, Jodie Ingles

Journal of Genetic Counseling | WILEY | Published : 2018

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 ..

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Grants

Awarded by National Heart Foundation of Australia Future Leader Fellowship


Awarded by National Health and Medical Research Council (NHMRC)


Awarded by NHMRC Project


Funding Acknowledgements

JI is the recipient of a National Heart Foundation of Australia Future Leader Fellowship (#100833). CS is the recipient of a National Health and Medical Research Council (NHMRC) Practitioner Fellowship (#1059156). This study is funded in part by an NHMRC Project Grant (#1059515).