Abstract
ObjectivesThe aim of the study was to investigate the psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales and Cardiac Module.MethodsThe PedsQL™ 4.0 Generic Core Scales and the PedsQL™ 3.0 Cardiac Module was administered to 254 caregivers of children (aged 2-18 years) and to 195 children (aged 5-18 years) at a pediatric cardiology outpatient unit. A postal survey on a demographically group-matched sample of the general population with 525 caregivers of children (aged 2-18 years) and 373 children (aged 5-18 years) was conducted with the PedsQL™ 4.0 Generic Core Scale. Responses were described, compared over subgroups of subjects, and were used to assess practical utility, distributional coverage, construct validity, internal consistency, and inter-reporter agreement of the instrument.ResultsThe moderate scale-level mean percentage of missing item responses (range 1.8-2.3%) supported the feasibility of the Generic Core Scales for general Hungarian children. Minimal to moderate ceiling effects and no floor effects were found on the Generic Core Scales. We observed stronger ceiling than floor effects in the Cardiac Module. Most of the scales showed satisfactory reliability with Cronbach's α estimates exceeding 0.70. Generally, moderate to good agreement was found between self- and parent proxy-reports in the patient and in the comparison group (intraclass correlation coefficient range 0.52-0.77), but remarkably low agreement in the perceived physical appearance subscale in the age group 5-7 years (0.18) and for the treatment II scale (problems on taking heart medicine) scale of the Cardiac Module in children aged 8-12 years (0.39). Assessing the construct validity of the questionnaires, statistically significant difference was found between the patient group and the comparison group only in the Physical Functioning Scale scores (p = 0.003) of the child self-report component, and in Physical (p = 0.022), Emotional, (p = 0.017), Psychosocial Summary (p = 0.019) scores and in the total HRQoL (health-related quality of life) scale score (p = 0.034) for parent proxy-report.ConclusionThe findings generally support the feasibility, reliability and validity of the Hungarian translation of the PedsQL™ 4.0 Generic Core Scales and the PedsQL™ 3.0 Cardiac Module in Hungarian children with heart disease.
Highlights
Medical progress has lead to increased survival, as a result a progressively increasing number of patients are living with congenital heart disease
The current study presents the psychometric properties of the Hungarian version of the PedsQLTM 4.0 Generic Core Scales and the PedsQLTM 3.0 Cardiac Module estimated on samples from the general Hungarian child population and from children with heart diseases
Sample characteristics The Hungarian translations of the PedsQLTM 4.0 Generic Core Scales and the PedsQLTM 3.0 Cardiac Module were administered to 195 children attending the cardiology outpatient unit aged 5-18 years and 254 parents of children aged 2-18 years
Summary
Medical progress has lead to increased survival, as a result a progressively increasing number of patients are living with congenital heart disease. Pediatric quality of life studies that investigate the individuals’ perceptions of their well-being in a multidimensional aspect (physical and psychosocial dimensions) are a relatively new field of research in pediatric cardiology internationally, and meeting professional requirements in a pediatric population brings more difficulty than in adults: identifying the relevant quality-of-life components of these child-patients and how to measure them, showing sensitivity to the continuous and rapid cognitive and emotional development of children, getting information from the patient and from a parent simultaneously, dealing with response-shift, in addition to the general requirements such as ensuring comparability of populations living in different conditions by using instruments with generic cores and disease specific modules, and adaptation of questionnaires to several languages and cultures [4,5,6,7,8,9,10,11]. Recent literature gives us an increasing volume of evidence that these studies can have an important role in the care of chronically ill children [12,13,14,15,16,17,18,19,20,21,22]
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