Abstract
Individuals with hypertrophic cardiomyopathy (HCM) and long QT syndrome (LQTS) are advised to avoid certain forms of exercise to reduce their risk of sudden death. Cardiovascular genetic counselors facilitate both adaptation to, and decision-making about, these exercise recommendations. This study describes decision-making and experiences of active adults who exercise above physicians’ recommendations. Purposive sampling was used to select adults with HCM and LQTS who self-identified as exercising above recommendations. Semi-structured interviews explored participants’ decision-making and the psychological impact of exercise recommendations. Fifteen individuals were interviewed (HCM: 10; LQTS: 5; mean age: 40). Transcripts were coded and analyzed for underlying themes. Despite exercising above recommendations, nearly all participants made some modifications to their prior exercise regimen. Often these decisions changed over time, underscoring the importance of shared decision-making conversations beyond the initial evaluation. The importance of exercise was frequently cited as a reason for continued exercise, as were perceptions of sudden death risk as low, acceptable, or modifiable. Many participants reported that family and friends supported their exercise decisions, with a minority having family or friends that expressed significant reservations. Genetic counselors, cardiologists, and nurses can use these data to inform their counseling regarding exercise recommendations.
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References
Ackerman, M. J. (2015). Long QT syndrome and sports participation oil and water or an acceptable and manageable combination? JACC: Clinical Electrophysiology, 1(1–2), 71–73. https://doi.org/10.1016/j.jacep.2015.03.009.
Ackerman, M. J., Zipes, D. P., Kovacs, R. J., & Maron, B. J. (2015). Eligibility and disqualification recommendations for competitive athletes with cardiovascular abnormalities: task force 10: the cardiac channelopathies: a scientific statement from the American Heart Association and American College of Cardiology. Circulation, 132, e326–e329. https://doi.org/10.1161/CIR.0000000000000246.
Afshar, K., & Bunch, J. (2017). Return-to-play in 2017 and the role of shared decision-making in patients with inherited and acquired channelopathies and cardiomyopathies. Current Treatment Options in Cardiovascular Medicine, 19(10), 75.
Asif, I., Price, D., Fisher, L., Zakrajsek, R., Larsen, L., Raabe, J., et al. (2015). Stages of psychological impact after diagnosis with serious or potentially lethal cardiac disease in young competitive athletes: a new model. Journal of Electrocardiology, 48(3), 298–310. https://doi.org/10.1016/j.jelectrocard.2014.12.018.
Attride-Stirling, J. (2001). Thematic networks: an analytic tool for qualitative research. Qualitative Research, 1(3), 385–405. https://doi.org/10.1177/146879410100100307.
Aziz, P., Sweeten, T., Vogel, R., Bonney, W., Henderson, J., Patel, A. R., et al. (2015). Sports participation in genotype positive children with long QT syndrome. JACC: Clinical Electrophysiology, 1(1–2), 62–70. https://doi.org/10.1016/j.jacep.2015.03.006.
Baggish, A., Ackerman, M. J., & Lampert, R. (2017). Competitive sport participation among athletes with heart disease. Circulation, 136, 1569–1571. https://doi.org/10.1161/CIRCULATIONAHA.117.029639.
Berg, A., Meyers, L., Dent, K., Rothwell, E., & Everitt, M. (2018). Psychological impact of sports restriction in asymptomatic adolescents with hypertrophic cardiomyopathy, dilated cardiomyopathy, and long QT syndrome. Progress in Pediatric Cardiology, 49, 57–62.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa.
Caleshu, C., Kasparian, N. A., Edwards, K. S., Yeates, L., Semsarian, C., Perez, M., et al. (2016). Interdisciplinary psychosocial care for families with inherited cardiovascular diseases. Trends in Cardiovascular Medicine, 26, 1–7. https://doi.org/10.1016/j.tcm.2016.04.010.
Charles, C., Gafni, A., & Whelan, T. (1997). Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Social Science & Medicine, 44(5), 681–692.
Cheung, C. C., Laksman, Z. W. M., Mellor, G., Sanatani, S., & Krahn, A. D. (2016). Exercise and inherited arrhythmias. Canadian Journal of Cardiology, 32, 452–458. https://doi.org/10.1016/j.cjca.2016.01.007.
DeCuir-Gunby, J. T., Marshall, P. L., & McCulloch, A. W. (2011). Developing and using a codebook for the analysis of interview data: an example from a professional development research project. Field Methods, 23(2), 136–155. https://doi.org/10.1177/1525822X10388468.
Dedoose Version 7.1.13: Web application for managing, analyzing and presenting qualitative and mixed method research data. (2016). Los Angeles, CA: SocioCultural Research Consultants, LLC. Retrieved from www.dedoose.com
Etheridge, S., Saarel, E., & Martinez, M. (2018). Exercise participation and shared decision-making in patients with inherited channelopathies and cardiomyopathies. Heart Rhythm, 15(6), 915–920.
Gersh, B. J., Maron, B. J., Bonow, R. O., Dearani, J. A., Fifer, M. A., Link, M. S., et al. (2011). 2011 ACCF/AHA guideline for the diagnosis and treatment of hypertrophic cardiomyopathy: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. Circulation, 124, e783–e831. https://doi.org/10.1161/CIR.0b013e318223e2bd.
Hanson, J. L., Balmer, D. F., & Giardino, A. P. (2011). Qualitative research methods for medical educators. Academic Pediatrics, 11(5), 375–386. https://doi.org/10.1016/j.acap.2011.05.001.
Hayashi, M., Shimizu, W., & Albert, C. M. (2015). The spectrum of epidemiology underlying sudden cardiac death. Circulation Research, 116(12), 1887–1906. https://doi.org/10.1161/CIRCRESAHA.116.304521.
Ingles, J., Yeates, L., & Semsarian, C. (2011). The emerging role of the cardiac genetic counselor. HRTHM, 8(12), 1958–1962. https://doi.org/10.1016/j.hrthm.2011.07.017.
Johnson, J. N., & Ackerman, M. J. (2013). Return to play? Athletes with congenital long QT syndrome. British Journal of Sports Medicine, 47, 28–33. https://doi.org/10.1136/bjsports-2012-091751.
Lampert, R., Olshansky, B., Heidbuchel, H., Lawless, C., Saarel, E., Ackerman, M., et al. (2013). Safety of sports for athletes with implantable cardioverter-defibrillators: results of a prospective, multinational registry. Circulation, 127, 2021–2030. https://doi.org/10.1161/CIRCULATIONAHA.112.000447.
Landis, J., & Koch, G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33(1), 159–174.
Law, I. H., & Shannon, K. (2012). Implantable cardioverter-defibrillators and the young athlete: can the two coexist? Pediatric Cardiology, 33, 387–393. https://doi.org/10.1007/s00246-012-0167-1.
Lewis, K., Stacey, D., & Matlock, D. (2014). Making decisions about implantable cardioverter-defibrillators from implantation to end of life: an integrative review of patients’ perspectives. The Patient - Patient-Centered Outcomes Research, 7(3), 243–260.
Luiten, R. C., Ormond, K., Post, L., Asif, I. M., Wheeler, M. T., & Caleshu, C. (2016). Exercise restrictions trigger psychological difficulty in active and athletic adults with hypertrophic cardiomyopathy. Open Heart, 3, 1–8. https://doi.org/10.1136/openhrt-2016-000488.
Maron, B. J., & Zipes, D. P. (2015). Eligibility and disqualification recommendations for competitive athletes with cardiovascular abnormalities: preamble, principles, and general considerations. Jacc, 3820(October).
Maron, B. J., Zipes, D. P., & Ackerman, M. J. (2005). 36th Bethesda Conference guidelines. Journal of the American College of Cardiology, 45(8), 1312–1375. https://doi.org/10.1016/j.jacc.2005.02.002.
Maron, B. J., Doerer, J. J., Haas, T. S., Tierney, D. M., & Mueller, F. O. (2009). Sudden deaths in young competitive athletes analysis of 1866 deaths in the United States, 1980-2006. Circulation, 119(8), 1085–1092. https://doi.org/10.1161/CIRCULATIONAHA.108.804617.
Mascia, G., Arbelo, E., Solimene, F., Giaccardi, M., Brugada, R., & Brugada, J. (2018). The long-QT syndrome and exercise practice: the never-ending debate. Journal of Cardiovascular Electrophysiology, 29(3), 489–496.
Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks: SAGE Publications.
Pelliccia, A. (2014). Long QT syndrome, implantable cardioverter defibrillator (ICD) and competitive sport participation: when science overcomes ethics. British Journal of Sports Medicine, 48(5), 1135–1136. https://doi.org/10.1136/bjsports-2013-092441.
Pelliccia, A., Fagard, R., Bjørnstad, H. H., Anastassakis, A., Arbustini, E., Assanelli, D., et al. (2005). Recommendations for competitive sports participation in athletes with cardiovascular disease. European Heart Journal, 26, 1442–1445. https://doi.org/10.1093/eurheartj/ehi325.
Reineck, E., Rolston, B., Bragg-Gresham, J. L., Salberg, L., Baty, L., Kumar, S., et al. (2013). Physical activity and other health behaviors in adults with hypertrophic cardiomyopathy. The American Journal of Cardiology, 111(7), 1034–1039. https://doi.org/10.1016/j.amjcard.2012.12.018.
Rhodes, A., Rosman, L., Cahill, J., Ingles, J., Murray, B., Tichnell, C., et al. (2016). Minding the genes: multidisciplinary approach towards genetic assessment of cardiovascular disease. Journal of Genetic Counseling. https://doi.org/10.1007/s10897-016-0017-z.
Rizvi, A. A., & Thompson, P. D. (2002). Hypertrophic cardiomyopathy: who plays and who sits. Current Sports Medicine Reports, 1, 93–99.
Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nursing and Health Sciences, 15(3), 398–405. https://doi.org/10.1111/nhs.12048.
Acknowledgements
This paper was done with the support of the Stanford Genetic Counseling program as the first author was a trainee at the time of the study. The work was conducted as part of the first author’s graduate genetic counseling training. The authors thank the participants for donating their time and sharing their experiences and Dr. Sylvia Bereknyei and Dr. Janine Bruce for their assistance with qualitative methodology.
Authorship Contributions
Trishna Subas contributed to study design, collection of quantitative data, conducted participant interviews, developed and revised the codebook, analyzed data, wrote and revised drafts of the manuscript, and approved the final manuscript. Rebecca Luiten contributed to study design, collected quantitative data, revised the codebook, edited manuscript drafts, and approved the final manuscript. Andrea Hanson-Kahn contributed to study design, assisted with codebook revisions, edited manuscript drafts, and approved the final manuscript. Matthew Wheeler contributed to study design, discussed emerging themes, edit manuscript drafts, and approved the final manuscript. Colleen Caleshu contributed to conceptualization of the project and study design, edited manuscript drafts, analyzed data, and approved the final manuscript. All authors agree to be accountable for the accuracy and integrity of the research presented.
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Trishna Subas, Rebecca Luiten, Andrea Hanson-Kahn, Matthew Wheeler, and Colleen Caleshu declare that they have no conflicts of interest.
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All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
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No animal studies were carried out by the authors for this article.
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Subas, T., Luiten, R., Hanson-Kahn, A. et al. Evolving Decisions: Perspectives of Active and Athletic Individuals with Inherited Heart Disease Who Exercise Against Recommendations. J Genet Counsel (2018). https://doi.org/10.1007/s10897-018-0297-6
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DOI: https://doi.org/10.1007/s10897-018-0297-6