{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,22]],"date-time":"2026-10-22T19:45:39Z","timestamp":1792698339571,"version":"4.5.0"},"reference-count":41,"publisher":"Oxford University Press (OUP)","issue":"2","license":[{"start":{"date-parts":[[2024,2,13]],"date-time":"2024-02-13T00:00:00Z","timestamp":1707782400000},"content-version":"vor","delay-in-days":12,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100002355","name":"AEPC","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100002355","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,2,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Aims<\/jats:title>\n                  <jats:p>In patients with catecholaminergic polymorphic ventricular tachycardia (CPVT), a rare inherited arrhythmia syndrome, arrhythmic events can be prevented by medication and lifestyle recommendations. In patients who experience breakthrough arrhythmic events, non-adherence plays an essential role. We aimed to investigate the incidence and potential reasons for non-adherence to medication and lifestyle recommendations in a large, international cohort of patients with CPVT.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods and results<\/jats:title>\n                  <jats:p>An online multilingual survey was shared with CPVT patients worldwide by their cardiologists, through peer-recruitment, and on social media from November 2022 until July 2023. Self-reported non-adherence was measured using the validated Medication Adherence Rating Scale (MARS) and a newly developed questionnaire about lifestyle. Additionally, validated questionnaires were used to assess potential reasons for medication non-adherence. Two-hundred-and-eighteen patients completed the survey, of whom 200 (92%) were prescribed medication [122 (61%) female; median age 33.5 years (interquartile range: 22\u201350)]. One-hundred-and-three (52%) were prescribed beta-blocker and flecainide, 85 (43%) beta-blocker, and 11 (6%) flecainide. Thirty-four (17%) patients experienced a syncope, aborted cardiac arrest or appropriate implantable cardioverter defibrillator shock after diagnosis. Nineteen (13.4%) patients were exercising more than recommended. Thirty (15%) patients were non-adherent to medication. Female sex [odds ratio (OR) 3.7, 95% confidence interval (CI) 1.3\u201312.0, P = 0.019], flecainide monotherapy compared to combination therapy (OR 6.8, 95% CI 1.6\u201331.0, P = 0.010), and a higher agreement with statements regarding concerns about CPVT medication (OR 1.2, 95% CI 1.1\u20131.3, P &amp;lt; 0.001) were independently associated with non-adherence.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>The significant rate of non-adherence associated with concerns regarding CPVT-related medication, emphasizes the potential for improving therapy adherence by targeted patient education.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/europace\/euae044","type":"journal-article","created":{"date-parts":[[2024,2,13]],"date-time":"2024-02-13T16:23:19Z","timestamp":1707841399000},"source":"Crossref","is-referenced-by-count":12,"title":["Insights into adherence to medication and lifestyle recommendations in an international cohort of patients with catecholaminergic polymorphic ventricular tachycardia"],"prefix":"10.1093","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8942-164X","authenticated-orcid":false,"given":"Puck J","family":"Peltenburg","sequence":"first","affiliation":[{"name":"Deparment of Clinical and Exprimental Cardiology, Heart Center, Amsterdam UMC, University of Amsterdam , Amsterdam , The Netherlands"},{"name":"Department of Pediatric Cardiology, Emma Children\u2019s Hospital, Amsterdam UMC, University of Amsterdam , Amsterdam , The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4248-320X","authenticated-orcid":false,"given":"Lieke M","family":"van den Heuvel","sequence":"additional","affiliation":[{"name":"Department of Genetics, University Medical Centre Utrecht , Utrecht , The Netherlands"},{"name":"Netherlands Heart Institute , Utrecht , the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dania","family":"Kallas","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, BC Children\u2019s Hospital , University of British Columbia, Vancouver , Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-3036-8796","authenticated-orcid":false,"given":"Cheyanne","family":"Bell","sequence":"additional","affiliation":[{"name":"Windland Smith Rice Sudden Death Genomics Laboratory, Division of Heart Rhythm Services and Pediatric Cardiology, Departments of Cardiovascular Medicine, Pediatric and Adolescent Medicine, and Molecular Pharmacology & Experimental Therapeutics, Mayo Clinic , Rochester, Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1786-9461","authenticated-orcid":false,"given":"Isabelle","family":"Denjoy","sequence":"additional","affiliation":[{"name":"Service de Cardiologie et CNMR Maladies Cardiaques H\u00e9r\u00e9ditaires Rares, H\u00f4pital Bichat APHP, Universit\u00e9 de Paris , Paris , France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8731-2853","authenticated-orcid":false,"given":"Elijah R","family":"Behr","sequence":"additional","affiliation":[{"name":"Cardiovascular Clinical Academic Group and Cardiology Research Centre, Molecular and Clinical Sciences Research Institute, St. George\u2019s, University of London, St. George\u2019s University Hospitals NHS Foundation Trust, Cranmer Terrace , London , UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ella","family":"Field","sequence":"additional","affiliation":[{"name":"Department of Pediatric Cardiology, Great Ormond Street Hospital , London , UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1556-9422","authenticated-orcid":false,"given":"Janneke A E","family":"Kammeraad","sequence":"additional","affiliation":[{"name":"Department of Pediatric Cardiology, Erasmus MC - Sophia , Rotterdam , The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4520-2725","authenticated-orcid":false,"given":"Sing-Chien","family":"Yap","sequence":"additional","affiliation":[{"name":"Department of Cardiology, Cardiovascular Institute, Erasmus MC , Rotterdam , The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5492-8619","authenticated-orcid":false,"given":"Vincent","family":"Probst","sequence":"additional","affiliation":[{"name":"Service de cardiologie, Universit\u00e9 de Nantes, CNRS, INSERM, l\u2019institut du thorax , Nantes , France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8011-3333","authenticated-orcid":false,"given":"Michael J","family":"Ackerman","sequence":"additional","affiliation":[{"name":"Windland Smith Rice Sudden Death Genomics Laboratory, Division of Heart Rhythm Services and Pediatric Cardiology, Departments of Cardiovascular Medicine, Pediatric and Adolescent Medicine, and Molecular Pharmacology & Experimental Therapeutics, Mayo Clinic , Rochester, Minnesota , USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4823-6974","authenticated-orcid":false,"given":"Nico A","family":"Blom","sequence":"additional","affiliation":[{"name":"Department of Pediatric Cardiology, Emma Children\u2019s Hospital, Amsterdam UMC, University of Amsterdam , Amsterdam , The Netherlands"},{"name":"Department of Pediatric Cardiology, Willem-Alexander Children\u2019s Hospital, Leiden University Medical Centre , Leiden , The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0528-0852","authenticated-orcid":false,"given":"Arthur A M","family":"Wilde","sequence":"additional","affiliation":[{"name":"Deparment of Clinical and Exprimental Cardiology, Heart Center, Amsterdam UMC, University of Amsterdam , Amsterdam , The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5276-1475","authenticated-orcid":false,"given":"Sally-Ann B","family":"Clur","sequence":"additional","affiliation":[{"name":"Department of Pediatric Cardiology, Emma Children\u2019s Hospital, Amsterdam UMC, University of Amsterdam , Amsterdam , The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8703-8527","authenticated-orcid":false,"given":"Christian","family":"van der Werf","sequence":"additional","affiliation":[{"name":"Deparment of Clinical and Exprimental Cardiology, Heart Center, Amsterdam UMC, University of Amsterdam , Amsterdam , The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2024,2,13]]},"reference":[{"key":"2024022315241817400_euae044-B1","doi-asserted-by":"crossref","first-page":"1512","DOI":"10.1161\/01.CIR.91.5.1512","article-title":"Catecholaminergic polymorphic ventricular tachycardia in children. 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