Generic Health-Related Quality of Life after Repair of Esophageal Atresia and Its Determinants within a German–Swedish Cohort

2018 ◽  
Vol 29 (01) ◽  
pp. 075-084 ◽  
Author(s):  
Sofie Flieder ◽  
Michaela Dellenmark-Blom ◽  
Stefanie Witt ◽  
Carmen Dingemann ◽  
Julia Quitmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Esophageal Atresia ◽  
Healthy Population ◽  
Health Related Quality ◽  
German Sample ◽  
Generic Hrqol ◽  
Related Quality ◽  
Health Related ◽  
Pedsql 4.0

Aim Despite advances of outcomes of esophageal atresia (EA), knowledge on patients' health-related quality of life (HRQoL) is sparse. Due to the heterogeneity of EA, larger cohorts need to be investigated to ensure reliability of data. Aim was to determine generic HRQoL after EA repair in a Swedish–German cohort. Patients and Methods Ethical approval was obtained. A total of 192 patients (2–18 years; 134 Swedish; 58 German) were included. Clinical data were reviewed. EA was classified in “severe” and “mild/moderate.” Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL 4.0) was used in appropriate versions (2–7 years; 8–18 years; self- [SR] and proxy report [PR]) to determine generic HRQoL. Results Swedish and German samples were clinically and demographically comparable. HRQoL was lower in “severe EA” versus “mild/moderate” (2–18 years; total score; PR 85.6 vs. 73.6; p < 0.001) and Gross A versus Gross C type EA (2–7 years; total score; PR 61.0 vs. 79.3; p = 0.035). Total HRQoL was higher in the Swedish versus German sample (2–18 years; total score; PR 82.3 vs. 72.7; p = 0.002). HRQoL was impaired in the German sample versus healthy population (2–18 years; total score; PR 72.7 vs. 82.7; p = 0.001). In German patients (8–18 years), HRQoL was higher in SR versus PR (80.7 vs. 74.7; p = 0.044). Patients' age and presence of VACTERL association or isolated anorectal malformations did not affect HRQoL. Various differences were detected regarding different dimensions of PedsQL 4.0. Conclusion In this first international study, we found several differences in perception of generic HRQoL. HRQoL appears to be determined by the type of EA and severity rather than patients' age or the presence of typical associated malformations. Country-specific differences may be culturally dependent, but further investigations are suggested. A condition-specific instrument validated for EA may provide additional insights.

scholarly journals Parent-Child-Agreement on Health-Related Quality of Life and its Determinants in Patients born with Esophageal Atresia – a Swedish-German cross-sectional study

2021 ◽  
Author(s):  
Stefanie Witt ◽  
Michaela Dellenmark-Blom ◽  
Susanne Kuckuck ◽  
Jens Dingemann ◽  
Kate Abrahamsson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Esophageal Atresia ◽  
Family Impact ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Generic Hrqol ◽  
Related Quality ◽  
Health Related ◽  
Parent Child

Abstract Background The aim was to compare parent and child-reported health-related quality of life (HRQOL) of children born with esophageal atresia (EA) and determine factors that affect the level of parent-child agreement. Methods We included 63 parent-child dyads of children born with EA aged 8-18 from Germany and Sweden. The generic PedsQL 4.0TM questionnaire and the condition-specific EA QOL questionnaire were used to assess children’s HRQOL from parents' and children’s perspectives. The PedsQLTM Family Impact Module was used to assess parental HRQOL and Family Functioning.Results On an individual level, intra-class correlation coefficients indicated strong levels of parent-child agreement (.61-.97). At the group level, the analyses showed no significant differences between the responses of parents and children. When a disagreement occurred, parents were more likely to rate generic HRQOL lower than the children (19-35%) and condition-specific HRQOL higher than the children (17-33%). Findings of the binary logistic regression analyzes showed that the child’s age, gender, and country (Germany vs. Sweden) were significant predictors of parent-child agreement in condition-specific HRQOL. We did not identify any significant variables that explain agreement for the generic HRQOL.Conclusion The parent-child agreement is mostly good, suggesting that parent-reports are a reliable source of information. However, discrepancies may occur and can be explained by the child's age, gender, and country (Sweden vs. Germany). Both perspectives are essential sources for treating EA patients and should not be considered right or wrong. Instead, this information broadens the perspective on pediatric EA patients.

scholarly journals Parent–child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish–German cross-sectional study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Stefanie Witt ◽  
Michaela Dellenmark-Blom ◽  
Susanne Kuckuck ◽  
Jens Dingemann ◽  
Kate Abrahamsson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Esophageal Atresia ◽  
Family Impact ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Generic Hrqol ◽  
Related Quality ◽  
Health Related ◽  
Parent Child

Abstract Background The aim was to compare parent and child-reported health-related quality of life (HRQOL) of children born with esophageal atresia (EA) and determine factors that affect the level of parent–child agreement. Methods We included 63 parent–child dyads of children born with EA aged 8–18 from Germany and Sweden. The generic PedsQL 4.0™ questionnaire and the condition-specific EA QOL questionnaire were used to assess children’s HRQOL from parents' and children’s perspectives. The PedsQL™ Family Impact Module was used to assess parental HRQOL and Family Functioning. Results On an individual level, intra-class correlation coefficients indicated strong levels of parent–child agreement (.61–.97). At the group level, the analyses showed no significant differences between the responses of parents and children. When a disagreement occurred, parents were more likely to rate generic HRQOL lower than the children (19–35%) and condition-specific HRQOL higher than the children (17–33%). Findings of the binary logistic regression analyzes showed that the child’s age, gender, and country (Germany vs. Sweden) were significant predictors of parent–child agreement in condition-specific HRQOL. We did not identify any significant variables that explain agreement for the generic HRQOL. Conclusion The parent–child agreement is mostly good, suggesting that parent-reports are a reliable source of information. However, discrepancies may occur and can be explained by the child's age, gender, and country (Sweden vs. Germany). Both perspectives are essential sources for treating EA patients and should not be considered right or wrong. Instead, this information broadens the perspective on pediatric EA patients.

scholarly journals Parent-Child-Agreement on Health-Related Quality of Life and its Determinants in Patients Born with Esophageal Atresia – A Swedish-German Cross-Sectional Study

2020 ◽  
Author(s):  
Stefanie Witt ◽  
Michaela Dellenmark-Blom ◽  
Susanne Kuckuck ◽  
Jens Dingemann ◽  
Kate Abrahamsson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Functioning ◽  
Esophageal Atresia ◽  
Family Impact ◽  
Health Related Quality ◽  
Generic Hrqol ◽  
Related Quality ◽  
Health Related ◽  
Parent Child

Abstract Background The aim was to compare parent and child reported health-related quality of life (HRQOL) of children born with esophageal atresia (EA) and to determine factors that affect the level of parent-child agreement. Methods We included 63 parent-child dyads of children born with EA aged 8-18 from Germany and Sweden. The generic PedsQL questionnaire and the condition-specific EA QOL questionnaire were used to assess children’s HRQOL from parents- and child’s perspective. The Peds QL Family Impact Module was used to assess parental HRQOL and Family Functioning.Results On an individual level, intra-class correlation coefficients indicated strong levels of parent-child agreement (.61-.97). At the group level, the analyses showed no significant differences between the responses of parents and children. In cases where disagreement occurred, parents were more likely to rate generic HRQOL lower than the children (19-35%) and condition-specific HRQOL higher than the children (17-33%). Findings of the multiple regression analysis showed that the country (Germany vs. Sweden) was found to be a significant predictor of parent-child agreement in generic HRQOL and parental HRQOL to be a significant predictor of parent-child agreement in condition-specific HRQOL.Conclusion The parent-child agreement is mostly good, suggesting that parent-reports are a reliable source of information. However, discrepancies may occur and cannot be explained by the child's age and gender, nor severity of the disease or Family Functioning, but solely by country respectively parental HRQOL. Clinicians should therefore not only observe the pediatric patient but also the parents.

scholarly journals Assessment of Quality of life Among Children with Cancer, Children Undergoing Hemodialysis and Children with Thalassemia: A Comparative Study

2020 ◽  
Author(s):  
Tayseer Afifi ◽  
Khamis Elessi ◽  
Obay Baraka ◽  
Mohammed Omar ◽  
Israa Ahmad ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Chronic Conditions ◽  
Poor Quality ◽  
Health Related Quality ◽  
Children With Cancer ◽  
Related Quality ◽  
Health Related ◽  
Pedsql 4.0 ◽  
Assess Quality

Abstract Purpose This study aims to evaluate health-related quality of life among children with different chronic conditions and make a comparison among them. In addition, the study will draw a comparison between children’s perspective about their quality of life and parents’ perspective. Furthermore, the study will address the associations between quality of life with disease severity, duration and the presence of other co-morbidities. Methods This was a prospective, analytical, correlational study design in which Pediatric Quality of Life Inventory (PedsQL 4.0 generic core scale) was administered to assess quality of life on 110 children; 50 children with cancer, 30 children with thalassemia and 30 children undergoing hemodialysis. Researchers interviewed children as well as their parents. Results Results showed that children with Thalassemia had the lowest scores and suffered from poor quality of life compared to the other two groups of children. Interestingly, quality of life level among children undergoing dialysis was lower than children with cancer. However, there were marked discrepancy between child’s and parents’ answers on scale questions. The level of quality of life, in all children, were statistically significant in relation with family size, income and parents’ education. Conclusion We identified high prevalence of poor level of health-related quality of life among children included in this study. The findings support that the quality of life among children with chronic conditions should receive more attention in our local medical settings.

Health-related Quality of Life of Children Treated for Non-syndromic Craniosynostosis

2021 ◽  
Author(s):  
Marizela Kljajic ◽  
Giovanni Maltese ◽  
Peter Tarnow ◽  
Peter Sand ◽  
Lars Kölby
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Syndromic Craniosynostosis ◽  
Proxy Reports ◽  
Surgical Methods ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Pedsql 4.0

Abstract Background: Assessing health-related quality of life (HRQoL) allows acquisition of the subjective perspective of patients regarding their health and functioning; however, little is known about the experiences of patients living with treated craniosynostosis (CS). Methods: School-aged children (7–16 years) treated for non-syndromic CS were assessed using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales via both self- and proxy reports.Results: Seventy-three patients and their parents responded to the PedsQL (response rate: 80.2%). Patients generally estimated HRQoL as high, with no difference in HRQoL found between treated sagittal (SS) or metopic (MS) synostosis. In the SS group, surgical methods involving spring-assisted surgery and pi-plasty were unrelated to HRQoL outcomes. Additionally, HRQoL was highly correlated with intelligence quotient (IQ) and adaptive behavior skills (ABAS). Furthermore, we observed differences in estimated HRQoL between self- and proxy reports (i.e., parents estimated child HRQoL as higher than did the children). Conclusions: Children treated for CS have a generally high HRQoL, and neither CS type nor surgical method influenced HRQoL outcomes. Moreover, children and parents estimated HRQoL differently, suggesting the importance of using both self- and proxy reporting in patient-reported measures. We found that HRQoL was strongly related to IQ and ABAS, indicating that the PedsQL can be used as a screening instrument to identify craniofacial patients in need of further psychological assessment.

scholarly journals Effect of asthma control on general health-related quality of life in patients diagnosed with adult-onset asthma

2019 ◽  
Vol 9 (1) ◽  
Author(s):  
Pinja Ilmarinen ◽  
Hind Juboori ◽  
Leena E. Tuomisto ◽  
Onni Niemelä ◽  
Harri Sintonen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sexual Activity ◽  
Asthma Control ◽  
Adult Onset ◽  
Health Related Quality ◽  
Uncontrolled Asthma ◽  
Generic Hrqol ◽  
Related Quality ◽  
Health Related

Abstract Health-related quality of life (HRQoL) is a well-established aspect of health that can be measured by both disease-specific and general instruments. The effect of uncontrolled asthma on generic HRQoL has not been shown in patients with clinically confirmed adult-onset asthma and with asthma control defined according to the Global Initiative for Asthma, so the aim of this study was to determine this. In the 12-year follow-up cohort of the Seinäjoki Adult Asthma Study (n = 203), patients with uncontrolled and partially controlled asthma had lower generic HRQoL as determined by 15D compared to the controlled group. On 10 out of 15 dimensions of 15D, the mean scores were significantly lower in patients with uncontrolled asthma compared with those with controlled asthma. The affected dimensions were mobility, breathing, sleeping, usual activities, mental function, discomfort and symptoms, depression, distress, vitality and sexual activity. In the Tobit regression analysis, a poorer 15D score was associated with uncontrolled asthma, lower postbronchodilator FEV1, female sex, depression, treated dyspepsia and poorer 15D score at diagnosis. Our results show that uncontrolled asthma affects everyday life in several aspects, including previously unknown components such as sexual activity and vitality.

scholarly journals Quality of life among children from São Paulo, Brazil: the impact of demographic, family and socioeconomic variables

2010 ◽  
Vol 26 (3) ◽  
pp. 631-636 ◽  
Author(s):  
Denise Ascenção Klatchoian ◽  
Claudio A. Len ◽  
Maria Teresa R. A. Terreri ◽  
Maria Odete E. Hilário
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Sao Paulo ◽  
São Paulo ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Pedsql 4.0 ◽  
The Impact

The Pediatric Quality of Life Inventory (PedsQL) 4.0 is a questionnaire that evaluates the health related quality of life of children and adolescents, considering different aspects of their development, including the physical, emotional, social and educational. We verified the impact of demographic, social, and economic factors, as well as the family situation, on the health related quality of life of a group of school children of the city of São Paulo, Brazil. The PedsQL 4.0 was applied to 240 children and adolescents aged 2 to 18 and their respective parents. More than two thirds of the families were from lower social strata (C, D, and E). A statistically significant difference was observed in scores when evaluating the health related quality of life across socioeconomic strata and we observed statistically significant differences in the emotional, social, psychosocial and total scores. The PedsQL 4.0 scores obtained through interviews were satisfactory when compared with other urban populations of children and adolescents, probably due to the homogeneity of the population studied.

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