Does the severity of congenital heart defects affect disease-specific health-related quality of life in children in Bosnia and Herzegovina?

Tahirović, Elnur; Begić, Hidajeta; Nurkic, Midhat; Tahirović, Husref; Varni, James W.

doi:10.1007/s00431-009-1060-7

Cited by 26 publications

(35 citation statements)

References 12 publications

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“…The severity of the cardiac disease and its effect on HRQOL has been discussed in earlier research (Berkes et al, 2010;Krol et al, 2003;Marino et al, 2010;Tahirovic et al, 2010). In the present study, the severity of the disease was associated with lower HRQOL.…”

Section: Discussionmentioning

confidence: 44%

The reliability of the Pediatric Quality of Life Inventory 3.0 Cardiac Module™ for Swedish children with congenital heart defects

2013

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The overall aim was to assess the reliability and accomplish a limited validation of the Pediatric Quality of Life Inventory 3.0 Cardiac Module Scales (PedsQL 3.0), Swedish version, in a sample of Swedish children diagnosed with congenital heart defects (CHD). A secondary aim was to assess whether the children's health-related quality of life (HRQOL) was affected by gender, age, severity of the CHD, surgical intervention and whether the child self-report and parent proxy-report were consistent. A total of 126 families at The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, participated in the study. The PedsQL Inventory 4.0 Generic Core Scales (PedsQL 4.0) and the PedsQL 3.0 were administered to 94 children (aged 5-18 years) with CHD and 126 parents (of children with CHD aged 2-18 years). The results showed that the internal consistency of the PedsQL 3.0 reached or exceeded Cronbach's alpha values of 0.70 for both child self-report and parent proxy-report. The PedsQL 4.0 and PedsQL 3.0 were highly correlated (r ¼ 0.78 for parents and r ¼ 0.79 for children), indicating convergent validity. Age group 5-7 years had the lowest estimated HRQOL in comparison with the age group 8-12 years and 13-18 years. The group of children with severe cardiac disease generally reported significantly lower HRQOL as compared with the mild and moderate groups ( p , 0.05). Children who had undergone cardiac surgery reported lower cardiac-specific HRQOL than children who were not surgically treated ( p , 0.05). In conclusion, the PedsQL 3.0, Cardiac Module, reached acceptable a-values and can be a useful tool in clinical practice and in research.

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Section: Discussionmentioning

confidence: 44%

The reliability of the Pediatric Quality of Life Inventory 3.0 Cardiac Module™ for Swedish children with congenital heart defects

2013

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“…In studies of children with chronic conditions, worse PedsQL scores were reported by children with cardiac defects in comparison with population norms10 21–23 or ‘healthy’ comparison groups 24–26. Children with more ‘severe’ CHDs rated QoL lower, although ‘severe’ was variously defined as cyanosis,24 or type of intervention 10 21. Many studies involved only a single CHD diagnosis;2 23 26–28 therefore, generalisability is limited.…”

Section: Discussionmentioning

confidence: 99%

Patient-reported quality of life outcomes for children with serious congenital heart defects

Knowles

Day

Wade

et al. 2014

Archives of Disease in Childhood

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ObjectiveTo compare patient-reported, health-related quality of life (QoL) for children with serious congenital heart defects (CHDs) and unaffected classmates and to investigate the demographic and clinical factors influencing QoL.DesignRetrospective cohort study.SettingUK National Health Service.PatientsUK-wide cohort of children with serious CHDs aged 10–14 years requiring cardiac intervention in the first year of life in one of 17 UK paediatric cardiac surgical centres operating during 1992–1995. A comparison group of classmates of similar age and sex was recruited.Main outcome measuresChild self-report of health-related QoL scores (Pediatric Quality of Life Inventory, PedsQL) and parental report of schooling and social activities.ResultsQuestionnaires were completed by 477 children with CHDs (56% boys; mean age 12.1 (SD 1.0) years) and 464 classmates (55%; 12.0 (SD 1.1) years). Children with CHDs rated QoL significantly lower than classmates (CHDs: median 78.3 (IQR 65.0–88.6); classmates: 88.0 (80.2–94.6)) and scored lower on physical (CHDs: 84.4; classmates: 93.8; difference 9.4 (7.8 to 10.9)) and psychosocial functioning subscales (CHDs: 76.7, classmates: 85.0; difference 8.3 (6.0 to 10.6)). Cardiac interventions, school absence, regular medications and non-cardiac comorbidities were independently associated with reduced QoL. Participation in sport positively influenced QoL and was associated with higher psychosocial functioning scores.ConclusionsChildren with serious CHDs experience lower QoL than unaffected classmates. This appears related to the burden of clinical intervention rather than underlying cardiac diagnosis. Participation in sports activities is positively associated with increased emotional well-being. Child self-report measures of QoL would be a valuable addition to clinical outcome audit in this age group.

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“…Numerous HRQOL measurements have been developed for children and adolescents [1][2][3][4], and the Pediatric Quality of Life Inventory (PedsQL TM ), developed in the United States, has demonstrated satisfactory psychometric properties in both diseased and healthy children [5][6][7][8][9][10]. The PedsQL TM includes well-established methods of child self-reporting and parent proxy reporting, which have been utilized in clinical trials in Japan and other countries worldwide [11][12][13][14][15][16].…”

Section: Introductionmentioning

confidence: 99%

Reliability and validity of the PedsQL™ Multidimensional Fatigue Scale in Japan

2011

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Does the severity of congenital heart defects affect disease-specific health-related quality of life in children in Bosnia and Herzegovina?

Cited by 26 publications

References 12 publications

The reliability of the Pediatric Quality of Life Inventory 3.0 Cardiac Module™ for Swedish children with congenital heart defects

The reliability of the Pediatric Quality of Life Inventory 3.0 Cardiac Module™ for Swedish children with congenital heart defects

Patient-reported quality of life outcomes for children with serious congenital heart defects

Reliability and validity of the PedsQL™ Multidimensional Fatigue Scale in Japan

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