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Health-related quality of life in children with heart failure as perceived by children and parents

Published online by Cambridge University Press:  17 August 2015

Ivan Wilmot ,
Constance E. Cephus ,
Amy Cassedy ,
Ian Kudel ,
Bradley S. Marino  and
John L. Jefferies
Ivan Wilmot*
Affiliation:
Division of Cardiology, Cincinnati Children’s Hospital Medical Center, Heart Institute, Cincinnati, Ohio, United States of America
Constance E. Cephus
Affiliation:
Baylor College of Medicine Department of Pediatrics, Division of Pediatric Cardiology, Texas Children’s Hospital, Houston, Texas, United States of America
Amy Cassedy
Affiliation:
Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, Heart Institute, Cincinnati, Ohio, United States of America
Ian Kudel
Affiliation:
Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Bradley S. Marino
Affiliation:
Feinberg School of Medicine Department of Pediatrics, Division of Cardiology, Northwestern University, Chicago, Illinois, United States of America
John L. Jefferies
Affiliation:
Division of Cardiology, Cincinnati Children’s Hospital Medical Center, Heart Institute, Cincinnati, Ohio, United States of America
*
Correspondence to: I. Wilmot, MD, Assistant Professor, Pediatric Heart Failure & Transplant, The Heart Institute, Cincinnati Children’s Hospital Medical Center, The University of Cincinnati College of Medicine, 3333 Burnet Avenue – MLC 2004, Cincinnati, Ohio 45229, United States of America. Tel: +513-803-4534; Fax: +513-803-4493; E-mail: [email protected]
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Abstract

Advancements in paediatric heart failure management have resulted in improved survival and a focus on long-term outcomes including health-related quality of life. We compared health-related quality of life in children with heart failure with healthy patients, children with chronic conditions, and children with cardiovascular disease.

Families (n=63) and children (n=73) aged 2–20 years with heart failure were enrolled and compared with data previously published for healthy patients (n=5480), those with chronic conditions (n=247), and those with cardiovascular disease (n=347). Patients and parents completed the PedsQL 4.0 and the Cardiac 3.0 Module health-related quality-of-life questionnaires. PedsQL scores including Total, Psychosocial Health Summary, and Physical were compared between groups. In general, patients with heart failure had lower scores than the healthy population (p=0.001), and comparable scores with those with chronic conditions. Parents perceived no difference in physical scores for children with heart failure when compared with healthy children, and perceived higher scores for children with heart failure when compared with those with chronic conditions (p⩽0.003). Furthermore, children with heart failure had decremental health-related quality-of-life scores as the American Heart Association stage of heart failure increased, such that patients with stage C heart failure had scores similar to children with severe cardiovascular disease.

Children with heart failure reported significantly impaired health-related quality of life compared with healthy children and similar scores compared with children with chronic conditions. Parental perceptions appear to underestimate these impairments. Children with heart failure appear to have progressive impairment of health-related quality of life with advancing stage of heart failure.

Keywords

Cardiomyopathyheart failurepaediatrichealth-related quality of life
Type
Original Articles
Information
Cardiology in the Young , Volume 26 , Issue 5 , June 2016 , pp. 885 - 893
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Copyright
© Cambridge University Press 2015 

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References

1. Hsu, DT, Pearson, GD. Heart failure in children: part I: history, etiology, and pathophysiology. Circ Heart Fail 2009; 2: 63–70.Google Scholar
2. Rossano, JW. Cost of heart failure admission in children in the United States. J Card Fail 2010; 16: S86.Google Scholar
3. Ware, JE. Methodology in behavioral and psychosocial cancer research. Conceptualizing disease impact and treatment outcomes. Cancer 1984; 53 (10 Suppl): 2316–2326.Google Scholar
4. Aaronson, NK. Quality of life: what is it? How should it be measured? Oncology 1988; 2: 69–76; 64.Google ScholarPubMed
5. Drotar, D. Measuring child health: scientific questions, challenges, and recommendations. Ambul Pediatr 2004; 4 (Suppl 4): 353–357.2.0.CO;2>CrossRefGoogle ScholarPubMed
6. Yancy, CW, Jessup, M, Bozkurt, B, et al. ACCF/AHA guideline for the management of heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. J Am Coll Cardiol 2013; 62: e147–e239.Google Scholar
7. Kirk, R, Dipchand, AI, Rosenthal, DN. ISHLT Guidelines for the Management of Pediatric Heart Failure. UAB Printing, Alabama, 2014.Google Scholar
8. Menteer, J, Beas, VN, Chang, JC, et al. Mood and health-related quality of life among pediatric patients with heart failure. Pediatr Cardiol 2013; 34: 431–437.Google Scholar
9. Friess, MR, Marino, BS, Cassedy, A, et al. Health-related quality of life assessment in children followed in a cardiomyopathy clinic. Pediatr Cardiol 2015; 36: 516–523.Google Scholar
10. Varni, JW, Burwinkle, TM, Seid, M, et al. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 2003; 3: 329–341.2.0.CO;2>CrossRefGoogle ScholarPubMed
11. Varni, JW, Seid, M, Kurtin, PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory Version 4.0 Generic Core Scales in healthy and patient population. Med Care 2001; 39: 800–812.CrossRefGoogle Scholar
12. Varni, JW, Limbers, CA, Burwinkle, TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 2007; 5: 43.Google Scholar
13. Varni, JW, Burwinkle, TM, Rappoff, MA, et al. The PedsQL in pediatric asthma:reliability and validity of the pediatric quality of life inventory generic core scales and asthma module. J Behav Med 2004; 27: 297–318.CrossRefGoogle ScholarPubMed
14. Goldstein, S, Graham, N, Burwinkle, T, Warady, B, Farrah, R, Varni, JW. Health-related quality of life in pediatric patients with ESRD. Pediatric Nephrilog 2006; 21: 846–850.CrossRefGoogle ScholarPubMed
15. Uzark, K. The Pediatric Quality of Life Inventory in children with heart disease. Prog Pediatr Cardiol 2003; 18: 141–148.Google Scholar
16. Lesman-Leegte, I, Jaarsma, T, Coyne, JC, et al. Quality of life and depressive symptoms in the elderly: a comparison between patients with heart failure and age- and gender-matched community controls. J Card Fail 2009; 15: 17–23.Google Scholar
17. Evangelista, LS, Dracup, K, Moser, DK, et al. Two-year follow-up of quality of life in patients referred for heart transplant. Heart Lung 2005; 34: 187–193.CrossRefGoogle ScholarPubMed
18. Hobbs, FD, Kenkre, JE, Roalfe, AK, et al. Impact of heart failure and left ventricular systolic dysfunction on quality of life: a cross-sectional study comparing common chronic cardiac and medical disorders and a representative adult population. Eur Heart J 2002; 23: 1867–1876.CrossRefGoogle Scholar
19. Moser, DK, Doering, LV, Chung, ML. Vulnerabilities of patients recovering from an exacerbation of chronic heart failure. Am Heart J 2005; 150: 984.CrossRefGoogle ScholarPubMed
20. Wong, CM, Hawkins, NM, Jhund, PS, et al. Clinical characteristics and outcomes of young and very young adults with heart failure The CHARM Programme (Candesartan in Heart Failure Assessment of Reduction in Mortality and Morbidity). J Am Coll Cardiol 2013; 62: 1845–1854.CrossRefGoogle Scholar
21. Azevedo, A, Bettencourt, P, Alvelos, M, et al. Health-related quality of life and stages of heart failure. Int J Cardiol 2008; 129: 238–244.CrossRefGoogle ScholarPubMed
22. Uzark, K, Jones, K, Slusher, J, et al. Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008; 121: e1060–e1067.Google Scholar
23. Marino, BS, Tomlinson, RS, Wernovsky, G, et al. Validation of the pediatric cardiac quality of life inventory. Pediatrics 2010; 126: 498–508.Google Scholar
24. Knowles, RL, Day, T, Wade, A, et al. Patient-reported quality of life outcomes for children with serious congenital heart defects. Arch Dis Child 2014; 99: 413–419.Google Scholar
25. Czosek, RJ, Bonney, WJ, Cassedy, A, et al. Impact of cardiac devices on the quality of life in pediatric patients. Circ Arrhythm Electrophysiol 2012; 5: 1064–1072.Google Scholar
26. Buyan, N, Turkmen, MA, Bilge, I, et al. Quality of life in children with chronic kidney disease (with child and parent assessments). Pediatr Nephrol 2010; 25: 1487–1496.Google Scholar
27. Theunissen, NC, Vogels, TG, Koopman, HM, et al. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 1998; 7: 387–397.CrossRefGoogle ScholarPubMed
28. White-Koning, M, Arnaud, C, Dickinson, HO, et al. Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy. Pediatrics 2007; 120: e804–e814.Google Scholar