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• W3201636614 abstract "HomeCirculation: Heart FailureVol. 14, No. 9Significant Variation in Exercise Recommendations for Youth With Cardiomyopathies or Fontan Circulation Free AccessLetterPDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissions ShareShare onFacebookTwitterLinked InMendeleyRedditDiggEmail Jump toFree AccessLetterPDF/EPUBSignificant Variation in Exercise Recommendations for Youth With Cardiomyopathies or Fontan CirculationAn Advanced Cardiac Therapies Improving Outcomes Network Learning Survey Michael Khoury, MD, Samuel Wittekind, MD, MSc, Ashwin K. Lal, MD, Jennifer Conway, MD, MSc, Neha Bansal, MD, Angela Lorts, MD, MBA, David Rosenthal, MD and Danielle Burstein, MD Michael KhouryMichael Khoury Correspondence to: Michael Khoury, MD, Pediatric Cardiology, Department of Pediatrics, Stollery Children’s Hospital, 8440 112th St, NW, Edmonton, AB, Canada T6G 2B7. Email E-mail Address: [email protected] https://orcid.org/0000-0001-6112-6860 Division of Pediatric Cardiology, Department of Pediatrics, University of Alberta, Edmonton, Canada (M.K., J.C.). Search for more papers by this author , Samuel WittekindSamuel Wittekind https://orcid.org/0000-0003-3192-0646 Division of Pediatric Cardiology, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, OH (S.W., A.L.). Search for more papers by this author , Ashwin K. LalAshwin K. Lal https://orcid.org/0000-0003-0935-6858 Division of Pediatric Cardiology, Department of Pediatrics, Primary Children’s Hospital, University of Utah, Salt Lake City (A.K.L.). Search for more papers by this author , Jennifer ConwayJennifer Conway Division of Pediatric Cardiology, Department of Pediatrics, University of Alberta, Edmonton, Canada (M.K., J.C.). Search for more papers by this author , Neha BansalNeha Bansal https://orcid.org/0000-0001-7026-3058 Division of Pediatric Cardiology, Department of Pediatrics, Children’s Hospital at Montefiore, Albert Einstein College of Medicine, Bronx, NY (N.B.). Search for more papers by this author , Angela LortsAngela Lorts Division of Pediatric Cardiology, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, OH (S.W., A.L.). Search for more papers by this author , David RosenthalDavid Rosenthal Division of Pediatric Cardiology, Department of Pediatrics, Lucile Salter Packard Children’s Hospital, Stanford University, Palo Alto, CA (D.R.). Search for more papers by this author and Danielle BursteinDanielle Burstein https://orcid.org/0000-0002-9870-7607 Division of Cardiology, Department of Pediatrics, Children’s Hospital of Philadelphia, PA (D.B.). Search for more papers by this author Originally published14 Sep 2021https://doi.org/10.1161/CIRCHEARTFAILURE.121.008738Circulation: Heart Failure. 2021;14Youth with cardiomyopathies or congenital heart disease with heart failure, including Fontan circulatory failure are often cared for in pediatric advanced heart failure clinics. A cornerstone of anticipatory guidance provided at these visits concerns exercise recommendations, with an underlying notion that excessive physical exertion in static or dynamic pursuits may increase the risk for sudden major adverse events.1 However, there are limited data supporting this. The importance of regular physical activity has been increasingly recognized in these patient populations as reflected in recent guidelines and position statements.2–5 The real-world practice patterns regarding physical activity recommendations in youth with cardiomyopathy or Fontan circulation are not known. We sought to evaluate this through a survey of North American pediatric cardiology providers with expertise in heart failure and cardiomyopathy through the Advanced Cardiac Therapies Improving Outcomes Network.The data that support the findings of this study are available from the corresponding author upon reasonable request. Survey questions were administered via the Survey Monkey platform to 44 Advanced Cardiac Therapies Improving Outcomes Network centers via e-mail in February 2020 and again in April 2020. Respondents remained anonymous and this study was exempt from research ethics board review. The survey provided clinical vignettes of varying disease severity for dilated cardiomyopathy, hypertrophic cardiomyopathy, left ventricular noncompaction cardiomyopathy, restrictive cardiomyopathy, and Fontan circulation. Respondents selected a single exercise recommendation from the following options: “complete restriction of all physical activities”; “low dynamic and static activities only”; “moderate or less dynamic/static activities only”; “no restrictions from recreational activity; limited competitive sports”’; “no exercise restrictions from competitive sports.” The survey also assessed how providers measure physical activity in their patients.There were 38 respondents from 24 centers across North America, representing 55% of the centers involved in the Advanced Cardiac Therapies Improving Outcomes Network. The respondent cohort included 32 cardiologists, 2 exercise physiologists, 1 physical/occupational therapist, and 3 “other” providers. Of respondents, 95% (36/38) reported routinely providing physical activity counseling to their patients. Practice variation across the clinical vignettes was noted (Figure). Vignettes with extremes of cardiac disease severity (mild or severe) had less variation in exercise recommendations. For example, for isolated left ventricular noncompaction cardiomyopathy with normal systolic and diastolic function, 89% (34/38) would not restrict from competitive sports. For those with dilated cardiomyopathy and mild systolic dysfunction and New York Heart Association/Ross class I, 61% (23/38) would not restrict from competitive sports and an additional 34% (13/38) would not restrict any recreational activity but would limit competitive sports. Conversely, all vignettes with dilated cardiomyopathy and moderate-severe left ventricular dysfunction corresponded with over 95% restricting from competitive sports. For hypertrophic cardiomyopathy, 74% (28/38) would not restrict recreational activity or provide no restrictions at all for patients with no obstruction while 8% (3/38) would recommend this for those with an implantable cardioverter-defibrillator for secondary prevention. A similar pattern was seen for patients with Fontan circulation; 78% (29/37) would permit competitive sports for Fontan patients with normal systolic and diastolic function, while 11% (4/38) provided this recommendation in the setting of Fontan with circulatory failure, with or without systolic dysfunction.Download figureDownload PowerPointFigure. Reported exercise recommendations among pediatric advanced heart failure practitioners for selected clinical scenarios. DCM indicates dilated cardiomyopathy; HCM, hypertrophic cardiomyopathy; NYHA, New York Heart Association; and RCM, restricted cardiomyopathy.With respect to assessing physical activity levels, 95% (36/38) reported using patient self-report, while 11% (4/38) used objective data from heart rate monitors or smart watches, despite 87% (33/38) stating that “wearables” had a potential role in physical activity promotion, prescription, and/or remote monitoring. A number of barriers to the use of “wearables” were identified, including significant costs to the patients/families, concerns about the accuracy of devices, and lack of unifying platforms across devices.In this survey of pediatric cardiomyopathy and heart failure providers from 24 centers in North America, there appeared to be marked practice variation with respect to exercise recommendations for youth with cardiomyopathies as well as Fontan circulation. Recommendations were generally more uniform for cases representing extremes of cardiac disease severity, compared with more moderate forms of cardiac disease. Compared with vignettes for patients with hypertrophic cardiomyopathy or dilated cardiomyopathy, exercise restrictions appeared to be less common for patients with Fontan circulation. The observed variance in this study is likely due to a paucity of evidence regarding the safety of unsupervised exercise in these populations. Indeed, relevant physical activity restriction and promotion guidelines are based largely on expert opinion.1Despite recognition of the potential role of “wearable” technology in the monitoring and promotion of physical activity by the majority of respondents, objective measures of physical activity remain infrequently used in the care of youth with heart failure. Rather, self-report of physical activity was the near universal method in this cohort and likely reflects real-world practice broadly. Thus, initiatives are warranted to promote and enable routine objective assessments of physical activity in youth with serious heart disease. Efforts such as these may facilitate shared decision-making between pediatric heart failure specialists and young patients and their families when discussing exercise practices in the context of promoting safe, beneficial physical activity.Nonstandard Abbreviations and AcronymsCHDcongenital heart diseaseSources of FundingNone.Disclosures None.FootnotesFor Sources of Funding and Disclosures, see page 1040.Correspondence to: Michael Khoury, MD, Pediatric Cardiology, Department of Pediatrics, Stollery Children’s Hospital, 8440 112th St, NW, Edmonton, AB, Canada T6G 2B7. Email [email protected]caReferences1. Maron BJ, Udelson JE, Bonow RO, Nishimura RA, Ackerman MJ, Estes NAM, Cooper LT, Link MS, Maron MS. Eligibility and disqualification recommendations for competitive athletes with cardiovascular abnormalities: task force 3: hypertrophic cardiomyopathy, arrhythmogenic right ventricular cardiomyopathy and other cardiomyopathies, and myocarditis: a scientific statement from the American Heart Association and American College of Cardiology.J Am Coll Cardiol. 2015; 66:2362–2371. doi: 10.1016/j.jacc.2015.09.035CrossrefMedlineGoogle Scholar2. Longmuir PE, Brothers JA, de Ferranti SD, Hayman LL, Van Hare GF, Matherne GP, Davis CK, Joy EA, McCrindle BW; American Heart Association Atherosclerosis, Hypertension and Obesity in Youth Committee of the Council on Cardiovascular Disease in the Young. Promotion of physical activity for children and adults with congenital heart disease: a scientific statement from the American Heart Association.Circulation. 2013; 127:2147–2159. doi: 10.1161/CIR.0b013e318293688fLinkGoogle Scholar3. Ommen SR, Mital S, Burke MA, Day SM, Deswal A, Elliott P, Evanovich LL, Hung J, Joglar JA, Kantor P, et al.. 2020 AHA/ACC guideline for the diagnosis and treatment of patients with hypertrophic cardiomyopathy: executive summary: a report of the American College of Cardiology/American Heart Association Joint Committee on Clinical Practice Guidelines.Circulation. 2020; 142:e533–e557. doi: 10.1161/CIR.0000000000000938LinkGoogle Scholar4. Rychik J, Atz AM, Celermajer DS, Deal BJ, Gatzoulis MA, Gewillig MH, Hsia T-Y, Hsu DT, Kovacs AH, McCrindle BW, et al.. Evaluation and management of the child and adult with fontan circulation: a scientific statement from the American Heart Association.Circulation. 2019; 140:e234–e284. doi: 10.1161/CIR.0000000000000696LinkGoogle Scholar5. Pelliccia A, Sharma S, Gati S, Bäck M, Börjesson M, Caselli S, Collet JP, Corrado D, Drezner JA, Halle M, et al.; ESC Scientific Document Group. 2020 ESC Guidelines on sports cardiology and exercise in patients with cardiovascular disease.Eur Heart J. 2021; 42:17–96. doi: 10.1093/eurheartj/ehaa605CrossrefMedlineGoogle Scholar Previous Back to top Next FiguresReferencesRelatedDetails September 2021Vol 14, Issue 9Article InformationMetrics Download: 102 © 2021 American Heart Association, Inc.https://doi.org/10.1161/CIRCHEARTFAILURE.121.008738PMID: 34517722 Originally publishedSeptember 14, 2021 Keywordscardiologyheart failurephysical exertionadolescentexercisePDF download SubjectsCardiomyopathyHeart FailureCongenital Heart Disease" @default.
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