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Participation in thrill-seeking activities by patients with hypertrophic cardiomyopathy: Individual preferences, adverse events and physician attitude.
Am Heart J 2019; 214:28-35AH

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.

Authors+Show Affiliations

Yale School of Medicine, Section of Cardiovascular Medicine, New Haven, CT.Oregon Health & Science University, Knight Cardiovascular Institute Hypertrophic Cardiomyopathy and Cardiogenetics Centers, Portland, OR.Department of Cardiology, Royal Prince Alfred Hospital; Sydney Medical School, University of Sydney; Agnes Ginges Centre for Molecular Cardiology, Centenary Institute, Australia.Department of Cardiology, Royal Prince Alfred Hospital; Sydney Medical School, University of Sydney; Agnes Ginges Centre for Molecular Cardiology, Centenary Institute, Australia.Oregon Health & Science University, Knight Cardiovascular Institute Hypertrophic Cardiomyopathy and Cardiogenetics Centers, Portland, OR.Hypertrophic Cardiomyopathy Association, Denville, New Jersey.HCMbeat, Los Angeles, California.Yale School of Medicine, Section of Cardiovascular Medicine, New Haven, CT.Cardiomyopathy Unit, Careggi University Hospital, Florence, Italy.Cardiomyopathy Unit, Careggi University Hospital, Florence, Italy.Yale School of Medicine, Section of Cardiovascular Medicine, New Haven, CT. Electronic address: daniel.jacoby@yale.edu.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

31152873

Citation

Papoutsidakis, Nikolaos, et al. "Participation in Thrill-seeking Activities By Patients With Hypertrophic Cardiomyopathy: Individual Preferences, Adverse Events and Physician Attitude." American Heart Journal, vol. 214, 2019, pp. 28-35.
Papoutsidakis N, Heitner S, Ingles J, et al. Participation in thrill-seeking activities by patients with hypertrophic cardiomyopathy: Individual preferences, adverse events and physician attitude. Am Heart J. 2019;214:28-35.
Papoutsidakis, N., Heitner, S., Ingles, J., Semsarian, C., Mannello, M., Salberg, L., ... Jacoby, D. (2019). Participation in thrill-seeking activities by patients with hypertrophic cardiomyopathy: Individual preferences, adverse events and physician attitude. American Heart Journal, 214, pp. 28-35. doi:10.1016/j.ahj.2019.04.001.
Papoutsidakis N, et al. Participation in Thrill-seeking Activities By Patients With Hypertrophic Cardiomyopathy: Individual Preferences, Adverse Events and Physician Attitude. Am Heart J. 2019;214:28-35. PubMed PMID: 31152873.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Participation in thrill-seeking activities by patients with hypertrophic cardiomyopathy: Individual preferences, adverse events and physician attitude. 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, Y1 - 2019/04/08/ PY - 2019/04/01/received PY - 2019/04/01/accepted PY - 2019/6/4/pubmed PY - 2019/6/4/medline PY - 2019/6/2/entrez SP - 28 EP - 35 JF - American heart journal JO - Am. Heart J. VL - 214 N2 - 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. SN - 1097-6744 UR - https://www.unboundmedicine.com/medline/citation/31152873/Participation_in_thrill-seeking_activities_by_patients_with_hypertrophic_cardiomyopathy:_Individual_preferences,_adverse_events_and_physician_attitude L2 - https://linkinghub.elsevier.com/retrieve/pii/S0002-8703(19)30076-6 DB - PRIME DP - Unbound Medicine ER -