Abstract
Modern consensus panel guidelines recommend restriction from most organized sports for patients with moderate or severe aortic stenosis (AS). However, there is little published data on how frequently physicians deviate from guidelines, how well patients adhere to exercise restrictions, or the effect of restriction on patient-reported quality of life. In this study, we surveyed 93 subjects with AS and their cardiologists regarding participation in organized sports, physical activity, weightlifting, and exercise restriction. Subjects completed the pediatric quality of life inventory (PedsQL) and the pediatric cardiac quality of life inventory (PCQLI). We found that subjects with severe AS (n = 3) were commonly, but not universally, restricted from organized sports (n = 2, 66%). Subjects with moderate AS (n = 40) were rarely restricted from organized sports (n = 6, 17%). No physician-specific characteristics were associated with increased likelihood of recommending exercise restriction. Subjects were more likely to be restricted if they were older (16 years vs. 13 years, p 0.02) and had moderate versus mild AS (p 0.013). PCQLI scores for teens and young adults with AS (age 13–25) were lower than a comparison group of patients with mild congenital heart disease. For all age groups, the PedsQL social functioning score was lower for subjects with exercise restriction (p 0.052). In summary, cardiologists apply consensus guidelines leniently when restricting patients with moderate/severe AS from organized sports and weightlifting. Patients with AS routinely adhere to exercise restriction recommendations. Children and young adults with AS and exercise restriction have lower QOL scores in the social functioning domain.
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References
Hoffman JI, Kaplan S (2002) The incidence of congenital heart disease. J Am Coll Cardiol 39(12):1890–1900
Brown D et al (2010) Sudden unexpected death after balloon valvuloplasty for congenital aortic stenosis. J Am College Cardiol. 56(23):1939–1946
Keane JF, Driscoll DJ, Gersony WM et al (1993) Second natural history study of congenital heart defects. Results of treatment of patients with aortic valvar stenosis. Circulation 87(2):16–27
Maron BJ, Doerer JJ, Haas TS, Tierney DM, Mueller FO (2009) Sudden deaths in young competitive athletes: analysis of 1866 deaths in the United States, 1980–2006. Circulation 119:1085–1092
Doyle EF, Arumugham P, Lara E, Rutkowski MR, Kiely B (1974) Sudden death in young patients with congenital aortic stenosis. Pediatrics 53:481–489
Maron BJ (2003) Sudden death in young athletes. N Engl J Med 349:1064–1075
Maron BJ, Zipes DP et al (2005) 36th Bethesda conference: eligibility recommendations for competitive athletes with cardiovascular abnormalities. J Am Coll Cardiol 45(8):1312–1375
Maron BJ, Zipes DP, Kovacs RJ, On behalf of the American Heart Association Electrocardiography and Arrhythmias Committee of the Council on Clinical Cardiology, Council on Cardiovascular Disease in the Young Council on Cardiovascular and Stroke Nursing, Council on Functional Genomics and Translational Biology, American College of Cardiology (2015) Eligibility and disqualification recommendations for competitive athletes with cardiovascular abnormalities: preamble, principles, and general considerations: a scientific statement from the American Heart Association and American College of Cardiology. J Am Coll Cardiol 66:2343–2349
Maron BJ, Thompson PD, Ackerman MJ et al (2007) Recommendations and considerations related to preparticipation screening for cardiovascular abnormalities in competitive athletes:2007 update: a scientific statement from the American Heart Association Council on nutrition, physical activity, and metabolism: endorsed by the American college of cardiology foundation. Circulation 115:1643–1655
Uzark K, Jones K, Slusher J, Limbers CA, Burwinkle TM, Varni JW (2008) Quality of life in children with heart disease as perceived by children and parents. Pediatrics 121:e1060–e1067
Varni JW, Limbers CA, Burwinkle TM (2007) How young can children reliably and validly self-report their health-related quality of life?: an analysis of 8,591 children across age subgroups with the PedsQL 40 generic core scales. Health Quality Life Outcomes. https://doi.org/10.1186/1477-7525-5-1
Longmuir PE, McCrindle BW (2009) Physical activity restrictions for children after the Fontan operation: disagreement between parent, cardiologist, and medical record reports. Am Heart J 157(5):853–859
Dean PN, Gillespie CW, Greene EA et al (2015) Sports participation and quality of life in adolescents and young adults with congenital heart disease. Congenit Heart Dis Mar-Apr 10(2):169–179
McCrindle BW, Williams RV, Mital S, Clark BJ, Russell JL, Klein G, Eisenmann JC (2007) Physical activity levels in children and adolescents are reduced after the Fontan procedure, independent of exercise capacity, and are associated with lower perceived general health. Arch Dis Child 92:509–514
U.S. Department of Health and Human Services (2018) Physical activity guidelines for Americans, 2nd edn. U.S. Department of Health and Human Services, Washington
Pemberton VL, McCrindle BW, Barkin S et al (2010) Report of the National heart, lung, and blood institute’s working group on obesity and other cardiovascular risk factors in congenital heart disease. Circulation 121:1153–1159
Caterini J, Stepfanie E, Campisi B, Cifra B (2020) Physical activity promotion in pediatric congenital heart disease: are we running late? Can J Cardiol 36(9):1406–1416
Williams CA, Gowing L, Horn R, Stuart AG (2017) A survey of exercise advice and recommendations in the United Kingdom paediatric cardiac clinics. Cardiol Young 27(5):951–956
Pelliccia A, Sharma S, Gati S et al (2021) 2020 ESC guidelines on sports cardiology and exercise in patients with cardiovascular disease: the task force on sports cardiology and exercise in patients with cardiovascular disease of the European Society of Cardiology (ESC). Eur Heart J 42(1):17–96
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This work was supported by the New England Congenital Cardiology Research Foundation (grant number 70410).
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All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by LM, JR and KG. The first draft of the manuscript was written by LM, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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Mansfield, L.K., Reichman, J.R., Crowley, D.I. et al. Living with Congenital Aortic Stenosis: Exercise Restriction, Patterns of Adherence, and Quality of Life. Pediatr Cardiol (2023). https://doi.org/10.1007/s00246-023-03165-2
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DOI: https://doi.org/10.1007/s00246-023-03165-2