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The impact on health\u2010related quality of life (HR\u2010QoL) and psychosocial outcomes is not known. We sought to provide the first description of HR\u2010QoL and psychosocial wellbeing of adults with CPVT, parents of affected children and at\u2010risk relatives. Participants were recruited through the Australian Genetic Heart Disease Registry and invited to complete a cross\u2010sectional survey comprising a number of validated scales and open\u2010ended questions. Thirty\u2010five participants completed surveys (response rate 65%), including 19 with CPVT, 10 unaffected parents of a child with CPVT, and 7 at\u2010risk relatives (one participant considered patient and parent). Young patients &lt;40 years were significantly more likely to report anxiety (<jats:italic>p<\/jats:italic> = 0.04), depression (<jats:italic>p<\/jats:italic> = 0.03) and posttraumatic stress symptoms (<jats:italic>p<\/jats:italic> = 0.02) compared to older CPVT patients. Further, young patients with an implantable cardioverter defibrillator (ICD) reported significantly worse device\u2010related distress (<jats:italic>p<\/jats:italic> = 0.04) and shock anxiety (<jats:italic>p<\/jats:italic> = 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\u2010matched children, however quality of life of parents and at\u2010risk 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.<\/jats:p>","DOI":"10.1007\/s10897-017-0152-1","type":"journal-article","created":{"date-parts":[[2017,9,22]],"date-time":"2017-09-22T23:45:12Z","timestamp":1506123912000},"page":"549-557","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":26,"title":["Psychosocial Implications of Living with Catecholaminergic Polymorphic Ventricular Tachycardia in Adulthood"],"prefix":"10.1002","volume":"27","author":[{"given":"Ebony","family":"Richardson","sequence":"first","affiliation":[{"name":"Agnes Ginges Centre for Molecular Cardiology Centenary Institute Locked Bag 6 Newtown NSW 2042 Australia"},{"name":"Sydney Medical School University of Sydney Sydney NSW Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Spinks","sequence":"additional","affiliation":[{"name":"Agnes Ginges Centre for Molecular Cardiology Centenary Institute Locked Bag 6 Newtown NSW 2042 Australia"},{"name":"Department of Cardiology Royal Prince Alfred Hospital Sydney NSW Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Davis","sequence":"additional","affiliation":[{"name":"Royal Children's Hospital Flemington Rd, Parkville Melbourne VIC Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christian","family":"Turner","sequence":"additional","affiliation":[{"name":"The Heart Centre for Children The Children's Hospital Westmead NSW Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Atherton","sequence":"additional","affiliation":[{"name":"Department of Cardiology Royal Brisbane and Women's Hospital Brisbane QLD Australia"},{"name":"School of Medicine University of Queensland Brisbane QLD Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"McGaughran","sequence":"additional","affiliation":[{"name":"Genetic Health Queensland, Royal Brisbane &amp; Women's Hospital, Herston Brisbane QLD Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher","family":"Semsarian","sequence":"additional","affiliation":[{"name":"Agnes Ginges Centre for Molecular Cardiology Centenary Institute Locked Bag 6 Newtown NSW 2042 Australia"},{"name":"Sydney Medical School University of Sydney Sydney NSW Australia"},{"name":"Department of Cardiology Royal Prince Alfred Hospital Sydney NSW Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jodie","family":"Ingles","sequence":"additional","affiliation":[{"name":"Agnes Ginges Centre for Molecular Cardiology Centenary Institute Locked Bag 6 Newtown NSW 2042 Australia"},{"name":"Sydney Medical School University of Sydney Sydney NSW Australia"},{"name":"Department of Cardiology Royal Prince Alfred Hospital Sydney NSW Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2017,9,23]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.hrthm.2011.05.020"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1540-8167.2005.40134.x"},{"key":"e_1_2_12_4_1","doi-asserted-by":"crossref","unstructured":"Caleshu C. Kasparian N. A. Edwards K. S. Yeates L. Semsarian C. Perez M. et al. 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