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.

OBJECTIVES: The 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. METHODS: The 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. RESULTS: The 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 alpha 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. CONCLUSION: The 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.

Measuring health-related quality of life in Hungarian children attending a cardiology clinic with the Pediatric Quality of Life Inventory.

The aim of the study was to evaluate health-related 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 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 well-validated 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.

[Hungarian validation of the cardiac module of the Pediatric Quality of Life Inventory]. / A Pediatric Quality of Life Inventory (PedsQL) gyermekkori életminoség-méro kérdoív kardiológiai moduljának magyarországi validálása.

UNLABELLED: The authors report the validation process of the cardiac module of the Pediatric Quality of Life Inventory (PedsQL ) into Hungarian. BACKGROUND: The PedsQL which is a modular instrument to evaluate health-related quality of life (HRQL ) in children and adolescents of ages 2-18 years, comes up to the current professional requirements at a high level. There is no report on health-related quality of life measure in Hungary which was performed among children with heart disease. OBJECTIVE: To adapt and to test a pediatric quality of life questionnaire for measuring HRQL in children with heart disease. METHODS: Sequential validation process which follows international guidelines. Pilot-study on 105 children with heart disease. RESULTS: According to the results of the pilot-study the psychic domains have a negative influence on general HRQL index in both child and parent-proxy reports in all age groups. On the cardiac module parents of children of all age groups but only children of ages 5-7 years reported marked treatment anxiety. Cognitive and communication problems are mainly important for children of ages 8-18 years. Parent-child concordance is depending on the age of the child, there was expressed difference in the psychosocial domains. We have found no negative effect of heart operation on HRQL by itself but taking medicine may impair it. CONCLUSION: Further methodologic research should evaluate the psychometric properties of the newly validated Hungarian version of the PedsQL cardiac module. The detailed report about the validation process can help in the spreading of patient reported outcome measures in Hungary.