Hostname: page-component-78c5997874-fbnjt Total loading time: 0 Render date: 2024-11-10T07:37:23.411Z Has data issue: false hasContentIssue false
  • English
  • Français

Impact of a paediatric cardiac rehabilitation programme upon patient quality of life

Published online by Cambridge University Press:  07 January 2021

Kristin H. Kroll Open the ORCID record for Kristin H. Kroll [Opens in a new window] ,
Joshua R. Kovach ,
Salil Ginde ,
Roni M. Jacobsen ,
Michael Danduran ,
Andrea Foster  and
Cheryl L. Brosig
Kristin H. Kroll*
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Medical College of Wisconsin, Wauwatosa, WI, USA
Joshua R. Kovach
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Medical College of Wisconsin, Wauwatosa, WI, USA
Salil Ginde
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Medical College of Wisconsin, Wauwatosa, WI, USA
Roni M. Jacobsen
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, University of Colorado School of Medicine, Aurora, CO, USA Department of Medicine, Division of Cardiology, University of Colorado School of Medicine, Aurora, CO, USA
Michael Danduran
Affiliation:
Herma Heart Institute, Children’s Wisconsin, Wauwatosa, WI, USA College of Health Sciences, Marquette University, Milwaukee, WI, USA
Andrea Foster
Affiliation:
Herma Heart Institute, Children’s Wisconsin, Wauwatosa, WI, USA
Cheryl L. Brosig
Affiliation:
Department of Pediatrics, Division of Pediatric Cardiology, Medical College of Wisconsin, Wauwatosa, WI, USA
*
Author for corresponding: K. Kroll, PhD, Medical College of Wisconsin, 8701 W Watertown Plank R., Wauwatosa, WI, USA. Tel: 414-266-3918. E-mail: khkroll@mcw.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Introduction:

Cardiac rehabilitation programmes for paediatric patients with congenital heart disease (CHD) have been shown to promote emotional and physical health without any associated adverse events. While prior studies have demonstrated the effectiveness of these types of interventions, there has been limited research into how the inclusion of psychological interventions as part of the programme impacts parent-reported and patient-reported quality of life.

Materials and methods:

Patients between the ages of 7 and 24 years with CHD completed a cardiac rehabilitation programme that followed a flexible structure of four in person-visits with various multidisciplinary team members, including paediatric psychologists. Changes in scores from the earliest to the latest session were assessed regarding exercise capacity, patient functioning (social, emotional, school, psychosocial), patient general and cardiac-related quality of life, patient self-concept, and patient behavioural/emotional problems.

Results:

From their baseline to final session, patients exhibited significant improvement in exercise capacity (p = 0.00009). Parents reported improvement in the patient’s emotional functioning, social functioning, school functioning, psychosocial functioning, cognitive functioning, communication, and overall quality of life. While patients did not report improvement in these above areas, they did report perceived improvement in certain aspects of cardiac-related quality of life and self-concept.

Discussion:

This paediatric cardiac rehabilitation programme, which included regular consultations with paediatric psychologists, was associated with divergent perceptions by parents and patients on improvement related to quality of life and other aspects of functioning despite improvement in exercise capacity. Further investigation is recommended to identify underlying factors associated with the differing perceptions of parents and patients.

Keywords

Congenital heart diseaseemotional healthphysical activity
Type
Original Article
Information
Cardiology in the Young , Volume 31 , Issue 5 , May 2021 , pp. 804 - 811
Check for updates
Copyright
© The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Ten Harkel, AD, Takken, T. Exercise testing and prescription in patients with congenital heart disease. Int J Pediatr 2010; 791980. doi: 10.1155/2010/791980 CrossRefGoogle ScholarPubMed
Bellinger, DC, Newburger, JW. Neuropsychological, psychosocial, and quality-of-life outcomes in children and adolescents with congenital heart disease. Prog Pediatr Cardiol 2010; 29: 87–92.10.1016/j.ppedcard.2010.06.007CrossRefGoogle Scholar
Pinto, NM, Marino, BS, Wernovsky, G, et al. Obesity is a common comorbidity in children with congenital and acquired heart disease. Pediatrics 2007; 120: e1157–e1164. doi: 10.1542/peds.2007-0306 CrossRefGoogle ScholarPubMed
Di Liegro, CM, Schiera, G, Proia, P, Di Liegro, I. Physical activity and brain health. Genes (Basel) 2019; 10: 720. doi: 10.3390/genes10090720 CrossRefGoogle ScholarPubMed
Jacobsen, RM, Ginde, S, Mussatto, K, Neubauer, J, Earing, M, Danduran, M. Can a Home-Based Cardiac Physical Activity Program Improve the Physical Function Quality of Life in Children with Fontan Circulation? Congenit Heart Dis 2016; 11: 175–182. doi: 10.1111/chd.12330 CrossRefGoogle ScholarPubMed
Tikkanen, AU, Oyaga, AR, Riaño, OA, Álvaro, EM, Rhodes, J. Paediatric cardiac rehabilitation in congenital heart disease: a systematic review. Cardiol Young 2012; 22: 241–250. doi: 10.1017/S1047951111002010 CrossRefGoogle ScholarPubMed
Wittekind, SG, Mays, W, Gerdes, Y et al. Improved Exercise Performance in Pediatric Fontan Patients After Cardiac Rehabilitation. J Am Coll Cardiol 2017; 69 (11 Supplement): 575.CrossRefGoogle Scholar
Longmuir, PE, McCrindle, BW. Physical activity restrictions for children after the Fontan operation: disagreement between parent, cardiologist, and medical record reports. Am Heart J 2009; 157: 853–859. doi: 10.1016/j.ahj.2009.02.014 CrossRefGoogle ScholarPubMed
Mampuya, WM. Cardiac rehabilitation past, present and future: an overview. Cardiovasc Diagn Ther 2012; 2: 38–49. doi: 10.3978/j.issn.2223-3652.2012.01.02 Google ScholarPubMed
Van Hare, GF, Ackerman, MJ, Evangelista, JK, et al. Eligibility and Disqualification Recommendations for Competitive Athletes With Cardiovascular Abnormalities: Task Force 4: Congenital Heart Disease: A Scientific Statement From the American Heart Association and American College of Cardiology. J Am Coll Cardiol 2015; 66: 2372–2384. doi: 10.1016/j.jacc.2015.09.036 CrossRefGoogle ScholarPubMed
Mahar, MT, Guerieri, AM, Hanna, MS, Kemble, CD. Estimation of aerobic fitness from 20-m multistage shuttle run test performance. Am J Prev Med 2011; 41 (4 Suppl 2): S117–S123. doi: 10.1016/j.amepre.2011.07.008 CrossRefGoogle ScholarPubMed
Varni, JW, Seid, M, Rode, CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999; 37: 126–139. doi: 10.1097/00005650-199902000-00003 CrossRefGoogle ScholarPubMed
Marino, BS, Shera, D, Wernovsky, G, et al. The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease. Qual Life Res 2008; 17: 613–626. doi: 10.1007/s11136-008-9323-8 CrossRefGoogle ScholarPubMed
Piers, EV. The Piers-Harris Children’s Self Concept Scale. Western Psychological Services, Los Angeles, CA, 2002.Google Scholar
Zlatanović, L. The Role of the Person’s Self-Concept in Quality of Life Research. Facta Universitatis 2000; 7: 391–397.Google Scholar
Achenbach, TM, Rescorla, LA. Manual for the ASEBA School-Age Forms & Profiles. University of Vermont, Research Center for Children, Youth, & Families, Burlington, VT, 2001.Google Scholar
Harris, PA, Taylor, R, Thielke, R, Payne, J, Gonzalez, N, Conde, JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42: 377–381. doi: 10.1016/j.jbi.2008.08.010 CrossRefGoogle ScholarPubMed
Harris, PA, Taylor, R, Minor, BL, et al. The REDCap consortium: Building an international community of software platform partners. J Biomed Inform 2019; 95: 103208. doi: 10.1016/j.jbi.2019.103208 CrossRefGoogle ScholarPubMed
Bois, J, Lalanne, J, Delforge, C. The influence of parenting practices and parental presence on children’s and adolescents’ pre-competitive anxiety. J Sports Sci 2009; 27: 995–1005. Doi: 10.1080/02640410903062001 CrossRefGoogle ScholarPubMed
Cervelló, E, Santos-Rosa, F, Jiménez, R, Nerea, A, García, T. Motivación y ansiedad en jugadores de tenis. Revista Motricidad 2002; 9: 141–161.Google Scholar
Akamagwuna, U, Badaly, D. Pediatric cardiac rehabilitation: a review. Curr Phys Med Rehabil Rep 2019; 7: 67–80. doi.org/10.1007/s40141-019-00216-9 CrossRefGoogle Scholar
Magalhāes, S, Ribeiro, M, Barreira, A. Long-Term effects of a cardiac rehabilitation program in the control of cardiovascular risk factors. Revista Portuguesa de Cardiologia 2013; 32: 191–199. doi.org/10.1016/j.repce.2013.03.001 CrossRefGoogle ScholarPubMed
Uzark, K, Jones, K, Slusher, J, Limbers, CA, Burwinkle, TM, Varni, JW. Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008; 121: e1060–e1067. doi: 10.1542/peds.2006-3778 CrossRefGoogle ScholarPubMed
Zlotnik, S, Toglia, J. Measuring Adolescent Self-Awareness and Accuracy Using a Performance-Based Assessment and Parental Report. Front Public Health 2018; 6: 15. doi: 10.3389/fpubh.2018.00015 CrossRefGoogle ScholarPubMed
Rith-Najarian, LR, McLaughlin, KA, Sheridan, MA, Nock, MK. The biopsychosocial model of stress in adolescence: self-awareness of performance versus stress reactivity. Stress 2014; 17: 193–203. doi: 10.3109/10253890.2014.891102 CrossRefGoogle ScholarPubMed
Cremeens, J, Eiser, C, Blades, M. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes 2006; 4: 58. doi: 10.1186/1477-7525-4-58 CrossRefGoogle ScholarPubMed
Mueller, GC, Sarikouch, S, Beerbaum, P, et al. Health-Related quality of life compared with cardiopulmonary exercise testing at the midterm follow-up visit after tetralogy of Fallot repair: a study of the German competence network for congenital heart defects. Pediatr Cardiol 2013; 34: 1081–1087. doi: 10.1007/s00246-012-0603-2 CrossRefGoogle Scholar
Longmuir, PE, Brothers, JA, de Ferranti, SD, et al. 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.0b013e318293688f CrossRefGoogle ScholarPubMed
Madsen, KA, McCulloch, CE, Crawford, PB. Parent modeling: perceptions of parents’ physical activity predict girls’ activity throughout adolescence. J Pediatr 2009; 154: 278–283. doi: 10.1016/j.jpeds.2008.07.044 CrossRefGoogle ScholarPubMed
Brown, R, Ogden, J. Children’s eating attitudes and behaviour: a study of the modelling and control theories of parental influence. Health Educ Res 2004; 19: 261–271. doi: 10.1093/her/cyg040 CrossRefGoogle ScholarPubMed
Blumenthal, JA, Williams, SR, Wallace, AG, Williams, RBJ, Needles, TL. Physiological and Psychological Variables Predict Compliance to Prescribed Exercise Therapy in Patients Recovering from Myocardial Infarction. Psychosom Med 1982; 44: 519–527.CrossRefGoogle ScholarPubMed
Ziegelstein, RC, Fauerbach, SS, Stevens, SS, et al. Patients with depression are less likely to follow recommendations to reduce cardiac risk during recovery from a myocardial infarction. Arch Intern Med 2000; 160: 1818–1823.CrossRefGoogle ScholarPubMed