Participation in thrill-seeking activities by patients with hypertrophic cardiomyopathy

Individual preferences, adverse events and physician attitude

Nikolaos Papoutsidakis, Stephen Heitner, Jodie Ingles, Christopher Semsarian, Meghan Mannello, Lisa Salberg, Cynthia Waldman, Benjamin Vaccaro, Niccolo Maurizi, Iacopo Olivotto, Daniel Jacoby

    Research output: Contribution to journalArticle

    Abstract

    Background: Thrill-seeking activities are a favorite pastime for people of all ages. Patients with hypertrophic cardiomyopathy (HCM)are often barred from participation on the basis of danger for arrhythmias. Our aim was to collect information regarding the safety of thrill-seeking activities for HCM patients. Methods: An anonymous online survey invited adult HCM patients to report participation in 11 activities (rollercoaster riding, jet skiing, rafting, bungee jumping, rappelling, paragliding, kayaking/canoeing, motor racing, snowboarding, BASE jumping and skydiving)before and after HCM diagnosis, along with major (ICD shock, syncope)or minor (nausea, dizziness, palpitations, chest pain)adverse events related to participation, and relevant physician advice. Results: Six hundred forty-seven HCM patients completed the survey, with 571 (88.2%)reporting participation in ≥1 TSAs (participant age 50.85 ± 14.21, 56.6% female, 8143 post-diagnosis participations). At time of survey, 457 participants (70.6%)were ICD-carriers or had ≥1 risk factor for sudden cardiac death. Nine (1.5%)participants reported a major event during or immediately after (60 minutes)of surveyed activity. Minor adverse events were reported by 181 participants (31.6%). In addition, 8 participants reported a major adverse event >60 minutes later but within the same day. Regarding physician advice, of the 213 responders (32.9%)receiving specific advice, 56 (26.2%)were told safety data is absent with no definitive recommendation, while 24 (11.2%)and 93 (43.6%)were told TSAs were respectively safe or dangerous. Conclusions: In this cohort, participation in thrill-seeking activities rarely caused major adverse events. This information can be used for shared-decision making between providers and patients.

    Original languageEnglish (US)
    Pages (from-to)28-35
    Number of pages8
    JournalAmerican heart journal
    Volume214
    DOIs
    StatePublished - Aug 1 2019

    Fingerprint

    Hypertrophic Cardiomyopathy
    Physicians
    Skiing
    Safety
    Sudden Cardiac Death
    Syncope
    Dizziness
    Chest Pain
    Nausea
    Cardiac Arrhythmias
    Shock
    Decision Making
    Surveys and Questionnaires

    ASJC Scopus subject areas

    • Cardiology and Cardiovascular Medicine

    Cite this

    Participation in thrill-seeking activities by patients with hypertrophic cardiomyopathy : Individual preferences, adverse events and physician attitude. / Papoutsidakis, Nikolaos; Heitner, Stephen; Ingles, Jodie; Semsarian, Christopher; Mannello, Meghan; Salberg, Lisa; Waldman, Cynthia; Vaccaro, Benjamin; Maurizi, Niccolo; Olivotto, Iacopo; Jacoby, Daniel.

    In: American heart journal, Vol. 214, 01.08.2019, p. 28-35.

    Research output: Contribution to journalArticle

    Papoutsidakis, N, Heitner, S, Ingles, J, Semsarian, C, Mannello, M, Salberg, L, Waldman, C, Vaccaro, B, Maurizi, N, Olivotto, I & Jacoby, D 2019, 'Participation in thrill-seeking activities by patients with hypertrophic cardiomyopathy: Individual preferences, adverse events and physician attitude', American heart journal, vol. 214, pp. 28-35. https://doi.org/10.1016/j.ahj.2019.04.001
    Papoutsidakis, Nikolaos ; Heitner, Stephen ; Ingles, Jodie ; Semsarian, Christopher ; Mannello, Meghan ; Salberg, Lisa ; Waldman, Cynthia ; Vaccaro, Benjamin ; Maurizi, Niccolo ; Olivotto, Iacopo ; Jacoby, Daniel. / Participation in thrill-seeking activities by patients with hypertrophic cardiomyopathy : Individual preferences, adverse events and physician attitude. In: American heart journal. 2019 ; Vol. 214. pp. 28-35.
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    abstract = "Background: Thrill-seeking activities are a favorite pastime for people of all ages. Patients with hypertrophic cardiomyopathy (HCM)are often barred from participation on the basis of danger for arrhythmias. Our aim was to collect information regarding the safety of thrill-seeking activities for HCM patients. Methods: An anonymous online survey invited adult HCM patients to report participation in 11 activities (rollercoaster riding, jet skiing, rafting, bungee jumping, rappelling, paragliding, kayaking/canoeing, motor racing, snowboarding, BASE jumping and skydiving)before and after HCM diagnosis, along with major (ICD shock, syncope)or minor (nausea, dizziness, palpitations, chest pain)adverse events related to participation, and relevant physician advice. Results: Six hundred forty-seven HCM patients completed the survey, with 571 (88.2{\%})reporting participation in ≥1 TSAs (participant age 50.85 ± 14.21, 56.6{\%} female, 8143 post-diagnosis participations). At time of survey, 457 participants (70.6{\%})were ICD-carriers or had ≥1 risk factor for sudden cardiac death. Nine (1.5{\%})participants reported a major event during or immediately after (60 minutes)of surveyed activity. Minor adverse events were reported by 181 participants (31.6{\%}). In addition, 8 participants reported a major adverse event >60 minutes later but within the same day. Regarding physician advice, of the 213 responders (32.9{\%})receiving specific advice, 56 (26.2{\%})were told safety data is absent with no definitive recommendation, while 24 (11.2{\%})and 93 (43.6{\%})were told TSAs were respectively safe or dangerous. Conclusions: In this cohort, participation in thrill-seeking activities rarely caused major adverse events. This information can be used for shared-decision making between providers and patients.",
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    T1 - Participation in thrill-seeking activities by patients with hypertrophic cardiomyopathy

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    AU - Papoutsidakis, Nikolaos

    AU - Heitner, Stephen

    AU - Ingles, Jodie

    AU - Semsarian, Christopher

    AU - Mannello, Meghan

    AU - Salberg, Lisa

    AU - Waldman, Cynthia

    AU - Vaccaro, Benjamin

    AU - Maurizi, Niccolo

    AU - Olivotto, Iacopo

    AU - Jacoby, Daniel

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