Citations 1
Insights into adherence to medication and lifestyle recommendations in an international cohort of patients with catecholaminergic polymorphic ventricular tachycardia
Peltenburg, Puck J. , Heuvel, Lieke M. van den , Kallas, Dania , Bell, Cheyanne , Denjoy, Isabelle , Behr, Elijah R. , Kammeraad, Janneke A.E. , Yap, Sing‐Chien , Probst, Vincent , Ackerman, Michael J. , Wilde, Arthur A.M. , van den Heuvel, Lieke M , Kammeraad, Janneke A E , Yap, Sing-Chien , Probst, Vincent , Ackerman, Michael J , Blom, Nico A , Wilde, Arthur A M , Clur, Sally-Ann B , van der Werf, Christian , Behr, Elijah Raphael , Denjoy, Isabelle , Peltenburg, Puck J , Field, Ella , Blom, Nico A. , Clur, Sally‐Ann B. , Werf, Christian van der
Europace | February 13, 2024 | Volume: 26 | Issue: 2 | Pages: No page available
Abstract Aims 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. Methods and results 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: 22–50)]. 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) 1.3–12.0, P = 0.019], flecainide monotherapy compared to combination therapy (OR 6.8, 95% CI 1.6–31.0, P = 0.010), and a higher agreement with statements regarding concerns about CPVT medication (OR 1.2, 95% CI 1.1–1.3, P < 0.001) were independently associated with non-adherence. Conclusion The significant rate of non-adherence associated with concerns regarding CPVT-related medication, emphasizes the potential for improving therapy adherence by targeted patient education.