TY - JOUR
T1 - Experiences of athletes with arrhythmogenic cardiac conditions in returning to play
AU - Shapero, Kayle
AU - Gier, Chad
AU - Briske, Kaylie
AU - Spatz, Erica S.
AU - Wasfy, Meagan
AU - Baggish, Aaron L.
AU - Pierce, Stacey
AU - Ackerman, Michael J.
AU - Lampert, Rachel
N1 - Funding Information:
This work was supported in part by the Mayo Clinic Windland Smith Rice Comprehensive Sudden Cardiac Death Program. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. Drs Shapero, Gier, Spatz, Wasfy, and Baggish; Ms Pierce; Ms Briske: none. Dr Ackerman: consultant, Abbott, ARMGO Pharma, Audentes Therapeutics, Boston Scientific, Daiichi Sankyo, Invitae, LQT Therapeutics, Medtronic, Myokardia. Dr Lampert: honoraria, advisory board for Medtronic; honoraria, Abbott/St Jude; research funding, Medtronic, Boston Scientific, Abbott/St Jude. All authors attest they meet the current ICMJE criteria for authorship. Consent was obtained via phone (Yale ICD Sports Registry patients) and written consent (Mayo Clinic patients), as approved by each institution's Institutional Review Board (The Mayo Clinic Institutional Review Board and Yale Human Research Protection Program). The Mayo Clinic Institutional Review Board and the Yale Human Research Protection Program approved the study. The research reported in this study adhered to the guidelines outlined in the Declaration of Helsinki.
Publisher Copyright:
© 2022 Heart Rhythm Society
PY - 2022/4
Y1 - 2022/4
N2 - Background: Recommendations for return to play (RTP) for athletes with genetic (or congenital) heart diseases (GHD) predisposing to sudden cardiac death (SCD) have evolved from an initially paternalistic and conservative approach, to supporting a more flexible approach to decision-making. The experiences of athletes and their families during the RTP process are unknown. Objective: To understand current RTP processes. Methods: We administered a mixed-methods telephone interview combining quantitative and qualitative components to 30 athletes with a GHD who had RTP, and 23 parents. Participants were identified from the Yale ICD Sports registry and Mayo Clinic's Windland Smith Rice Genetic Heart Rhythm Clinic. Qualitative data were analyzed using a grounded theory approach to identify common themes. Results: Most common diagnoses were long QT syndrome and hypertrophic cardiomyopathy and most common sports, soccer, basketball, and football. Twenty-three athletes encountered ≥1 perceived barrier(s) to RTP: 17 were restricted by their first cardiologist; 6 were required to meet with school administrators, 4 signed waivers, and 3 hired lawyers. Common themes expressed by athletes and their parents were frustration with poor communication, perceived lack of physician knowledge of their diagnosis, and unilateral, paternalistic decision-making, as well as cynicism that physicians and schools were primarily concerned with liability. After RTP, 26 athletes had some form of emergency action plan, although responsibility was often left to the family. Conclusion: Many perceived barriers exist for athletes with GHD who wish to RTP after their diagnoses. Shared decision-making from the onset is critical for RTP.
AB - Background: Recommendations for return to play (RTP) for athletes with genetic (or congenital) heart diseases (GHD) predisposing to sudden cardiac death (SCD) have evolved from an initially paternalistic and conservative approach, to supporting a more flexible approach to decision-making. The experiences of athletes and their families during the RTP process are unknown. Objective: To understand current RTP processes. Methods: We administered a mixed-methods telephone interview combining quantitative and qualitative components to 30 athletes with a GHD who had RTP, and 23 parents. Participants were identified from the Yale ICD Sports registry and Mayo Clinic's Windland Smith Rice Genetic Heart Rhythm Clinic. Qualitative data were analyzed using a grounded theory approach to identify common themes. Results: Most common diagnoses were long QT syndrome and hypertrophic cardiomyopathy and most common sports, soccer, basketball, and football. Twenty-three athletes encountered ≥1 perceived barrier(s) to RTP: 17 were restricted by their first cardiologist; 6 were required to meet with school administrators, 4 signed waivers, and 3 hired lawyers. Common themes expressed by athletes and their parents were frustration with poor communication, perceived lack of physician knowledge of their diagnosis, and unilateral, paternalistic decision-making, as well as cynicism that physicians and schools were primarily concerned with liability. After RTP, 26 athletes had some form of emergency action plan, although responsibility was often left to the family. Conclusion: Many perceived barriers exist for athletes with GHD who wish to RTP after their diagnoses. Shared decision-making from the onset is critical for RTP.
KW - Athlete
KW - Cardiomyopathy
KW - Channelopathy
KW - Implantable cardioverter-defibrillator
KW - Shared decision-making
KW - Sports
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U2 - 10.1016/j.hroo.2022.01.009
DO - 10.1016/j.hroo.2022.01.009
M3 - Article
AN - SCOPUS:85128004493
VL - 3
SP - 133
EP - 140
JO - Heart Rhythm O2
JF - Heart Rhythm O2
SN - 2666-5018
IS - 2
ER -