Measuring health-related quality of life in Hungarian children with heart disease: psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales and the Cardiac Module

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.

Generic and disease-specific quality of life in adolescents with type 1 diabetes: comparison to age-matched healthy peers

“…In this study, the item -total internal consistency reliability (Cronbach's α) was good both in the healthy group (α = 0.851) and the group with diabetes (α = 0.895) [27]. The GCS has been previously validated by Berkes et al in the Hungarian population [28].…”

Quality of Life of Multiethnic Adolescents Living with a Parent with Cancer

“…Items are reversed-scored and linearly transformed to a 0-100 scale (0=100, 1=75, 2=50, 3=25, 4=0) so that higher scores indicate better functioning (Varni, 2000;Varni et al, 2003). The US English version of the PedsQL has been linguistically validated in many non-English-speaking countries (Reinfjell et al, 2006;Gkoltsiou et al, 2008;Berkes et al, 2010). The instrument had excellent internalconsistency reliability for the Total Scale Score (α=0.88 child), Physical Health Summary Score (α=0.80 child) and Psychosocial Health Summary Score (α=0.83 child) (Varni et al, 2003).…”

Measurement Properties of the Arabic Lebanon Version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales for Young Child (5 - 7 years), and Child Aged 8 - 12 Years: Quality of Life of in Urban and Rural Children in Lebanon

“…The last decade has witnessed a dramatic increase in the development and utilization of pediatric health-related quality of life (HRQOL) measures (Varni, Burwinkle, & Lane, 2005;Varni, Limbers, & Burwinkle, 2007;Solans et al, 2008;MAPI Research Institute) that focuses on individual's subjective evaluation of physical and psychological status and overall sense of well-being (Sabbah et al, 2003;Mistry, Stevens, & Gorelick, 2009;Giannakopoulos et al, 2009;Stevanovic, 2009) (Eshaghi, Ramezani, Shahsanaee, & Pooya, 2006;Berkes et al, 2010). International studies on HRQOL in children are needed to gain a better understanding of the impact of public policies, interventions, therapies (Schmidt, Wenninger, Niemann, Wahn, & Staab, 2009), evaluation of interventions, and the prediction of health and social care need (Sabbah et al, 2003;Hatzmann, Maurice-Stam, Heymans, & Grootenhuis, 2009;Panepinto, Hoffmann, & Pajewski, 2009).…”

“…For our purpose, the PedsQL4.0 generic module represented a particularly attractive generic measure as it has been widely used in children and adolescent integrating generic core scales and disease-specific modules into one measurement system it is translated into many international languages (Berkes et al, 2010;Reinfjellet al, 2006;Sato et al, 2010) (http://www.pedsql.org) (Upton et al, 2005;Gkoltsiou et al, 2008;Bek, Simsek, Erel, Yakut, & Uygur, 2009). To the authors' knowledge, the Arabic version has not previously been assessed for validity and reliability in Lebanon.…”