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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: ivan.wilmot@cchmc.org
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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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