Eur J Pediatr (2010) 169:333–347 DOI 10.1007/s00431-009-1059-0
ORIGINAL PAPER
Measuring health-related quality of life in Hungarian children attending a cardiology clinic with the Pediatric Quality of Life Inventory™ Andrea Berkes & James W. Varni & István Pataki & László Kardos & Csilla Kemény & Gábor Mogyorósy
Received: 2 April 2009 / Accepted: 1 September 2009 / Published online: 19 September 2009 # Springer-Verlag 2009
Abstract The aim of the study was to evaluate healthrelated quality of life (HRQoL) of Hungarian children attending a pediatric cardiology outpatient unit with the Pediatric Quality of Life Inventory™ (PedsQL™) questionnaire. The PedsQL™ Generic Core Scales and Cardiac Module were administered to 254 families including 195 children during a pediatric cardiology outpatient visit, and 525 families including 373 children from the general population were examined by the PedsQL™ Generic Core Scale by a postal survey. The relationships between PedsQL™ scores and patient characteristics were analyzed. Hungarian children attending a cardiology outpatient unit as an entire group and patients with severe heart diseases report significantly lower physical functioning than the general population, while more HRQoL dimensions are negatively affected according to the parents' opinion. Children with congenital heart disease of mild and great A. Berkes (*) : I. Pataki : G. Mogyorósy Department of Pediatrics, University of Debrecen Medical School and Health Science Center, Nagyerdei krt. 98, Debrecen 4012, Hungary e-mail:
[email protected] J. W. Varni Department of Pediatrics, College of Medicine, Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, College Station, TX, USA L. Kardos Hygiene and Infection Control Services, Kenezy Hospital, Debrecen, Hungary C. Kemény Department of Behavioural Sciences, University of Debrecen Medical and Health Science Center, Debrecen, Hungary
complexity also report impaired psychosocial functioning. HRQoL impairment is concentrated to the age of 5–7 years. Comparing our results with previous ones on U.S. pediatric cardiologic samples, we found significantly lower scores mainly for the physical functioning and heart symptoms subscales. This HRQoL study with an internationally wellvalidated instrument on children with heart disease in a Central European country highlights certain aspects of the health-care system and brings the possibility for the assessment of pediatric cardiology outcomes in a more comprehensive way. Keywords Quality of life . Children . Heart disease . Hungary . Pediatric Quality of Life Inventory™ . PedsQL™
Introduction Progress in pediatric cardiology and pediatric cardiac surgery during the past decades has brought dramatic changes in the life expectancy of children with congenital heart disease (CHD). These advances in survival rates have lead to concerns with the quality of long-term survivability. CHD patients are reaching adulthood in rapidly rising numbers and face numerous problems in their daily lives. Previous studies have investigated the outcomes of cardiac interventions from biological aspects (anatomic, hemodynamic, electrophysiologic sequelae, exercise capacity) or focused on specific health-related quality of life (HRQoL) dimensions such as school function, neuropsychologic, cognitive status, participation in activities in children, marital status, employment, and health insurance coverage in adults [1–7]. However, there are only a few studies which have been carried out in pediatric populations using a generic HRQoL
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instrument or a cardiac disease-specific instrument [5, 8– 11]. Recent results demonstrate that approximately 20% of children with cardiovascular disease report significantly impaired psychosocial quality of life irrespective of the severity of the disease [11]. Patient-reported outcome (PRO) studies, including HRQoL studies, have not appeared in Hungary until the recent years and were mainly carried out in adult populations [12–20]. As the standards of care and results of medical care of children with heart disease in Hungary correspond to international recommendations, we considered it important to assess the outcomes of Hungarian pediatric cardiology care from the patients' point of view. Consequently, the objective of the present study was to test the Hungarian translations of the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales and Cardiac Module in a Hungarian pediatric cardiac disease sample.
Methods Subjects and settings The patient group was comprised of 195 children aged 5– 18 years and 254 parents of children aged 2–18 years. Age and gender characteristics of patients are presented in Table 1. The mother answered the questionnaire in 92.52% of the cases and the father in 7.48% of the cases. The families were recruited from the Pediatric Cardiology Outpatient Unit of the University of Debrecen Medical and Health Science Centre, Department of Pediatrics. Patients were categorized into various diagnostic groups. Patients with congenital heart disease were classified according to the guidelines set at the 32nd Bethesda Conference of the American College of Cardiology [21]. Clear classifications are given for categorizing conditions into three groups, namely simple congenital heart disease (such as isolated small or repaired atrial and septal defect without residua), congenital heart disease with moderate complexity (for example, coarctation of the aorta,
moderate-to-severe pulmonary valvar disease, or tetralogy of Fallot), and great complexity (such as double-outlet ventricle or conditions with conduits or after Fontan procedure). Table 2 presents the distribution of samples into different diagnostic groups by ages. Subjects were excluded from participation if the child had associated noncardiac chronic disease or major developmental disability, mental retardation that might affect health-related quality of life, or was
