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 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.

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 The association between family impact and health-related quality of life of children with idiopathic central precocious puberty in Chongqing, China

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Hong Yang ◽  
Shunqing Luo ◽  
Xiaohua Liang ◽  
Qin Lin ◽  
Ting Cheng ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Functioning ◽  
Precocious Puberty ◽  
Central Precocious Puberty ◽  
Family Impact ◽  
Health Related Quality ◽  
Idiopathic Central Precocious Puberty ◽  
Related Quality ◽  
Health Related

Abstract Background Idiopathic central precocious puberty (ICPP) reduces patient health-related quality of life (HRQoL). The impacts of disease and treatment on families are also an important concern. This study aimed to assess the association between family impact and HRQoL of children with ICPP. Methods We conducted a case–control study in Chongqing, China. A case group of 134 children with ICPP aged 5–12 years and their caregivers was recruited from a children’s hospital in Chongqing. A total of 210 gender- and age-matched subjects from two primary schools were selected as controls. PedsQLTM4.0 Generic Core Scales (GCS) and PedsQL™ Family Impact Module (FIM) were used in this study. Results Children with ICPP scored lower than controls in all HRQoL domains except physical functioning. In particular, the two groups were significantly different in emotional functioning scores (d = 0.414, P < 0.001). Compared with controls, ICPP families had lower scores in all dimensions of the FIM scale (d = 0.288–1.030, all P < 0.05). Factors associated with HRQoL of ICPP patients included: age of patients, type of medical treatment, employment status of caregivers, educational level of caregivers, parent HRQoL and family functioning (all P < 0.05). Conclusions Children with ICPP demonstrated lower quality of life and greater family impact compared to healthy controls. In addition, less impact of disease on parent HRQoL and family functioning was associated with better HRQoL of ICPP patients, patients aged older, treated with drug combination, cared by employed or well-educated caregivers reported better HRQoL. Health care professionals should pay more attention to younger patients treated with GnRHa alone, and provide targeted interventions for caregivers depending on their demographic background to reduce family impact and thereby improve patient HRQoL.

scholarly journals The Association Between Family Impact and Health-Related Quality of Life of Children With Idiopathic Central Precocious Puberty

2021 ◽  
Author(s):  
hong yang ◽  
shunqing luo ◽  
xiaohua liang ◽  
qin lin ◽  
ting cheng ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Functioning ◽  
Precocious Puberty ◽  
Central Precocious Puberty ◽  
Case Group ◽  
Family Impact ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract BackgroundIdiopathic central precocious puberty (ICPP) reduces patient health-related quality of life (HRQoL). The impacts of disease and treatment on families are also an important concern. This study aimed to assess the impact of ICPP on the HRQoL of children and parents; its impact on family functioning; and to determine the association between patient HRQoL and family impact, comprising the HRQoL of parents and family functioning.MethodsWe conducted a case-control study in Chongqing, China. A case group of 134 children with ICPP aged 5 to 12 years and their caregivers was recruited from a children’s hospital in Chongqing. A total of 210 gender- and age-matched subjects from two schools were selected as controls. Patient HRQoL was assessed by administering the PedsQLTM4.0 Generic Core Scales (GCS). Impacts of ICPP on parental HRQoL and family functioning were evaluated by the PedsQLTM Family Impact Module (FIM).ResultsA total of 344 subjects were enrolled, with 134 in the case group and 210 in the control group. Children with ICPP scored lower than controls in all HRQoL domains except physical functioning. In particular, the two groups were significantly different in emotional functioning scores (77.39±17.97 vs 84.12±14.35, P<0.001). Compared with controls, ICPP families had lower scores in all dimensions of the PedsQLTM4.0 FIM scale. In the case group, patient HRQoL was significantly correlated with family impact scores (r= 0.224, P<0.05), but not with the dimensions of social functioning, communication, worry, and family relationships. ConclusionsICPP worsens the HRQoL of patients and their parents, and also impairs family functioning. In addition, parents with higher HRQoL scores and family functioning generally reported higher HRQoL of children with ICPP. These findings suggest that health care professionals should identify and monitor ICPP patients’ psychosocial problems proactively, and provide targeted interventions to reduce family impact and thereby improve patient HRQoL.

scholarly journals Religiousness and health-related quality of life of older adults

2015 ◽  
Vol 49 (0) ◽  
Author(s):  
Gina Andrade Abdala ◽  
Miako Kimura ◽  
Yeda Aparecida de Oliveira Duarte ◽  
Maria Lúcia Lebrão ◽  
Bernardo dos Santos
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Family Functioning ◽  
Equation Modeling ◽  
Health Related Quality ◽  
Intrinsic Religiousness ◽  
Related Quality ◽  
Health Related ◽  
The Relationship

OBJECTIVE To examine whether religiousness mediates the relationship between sociodemographic factors, multimorbidity and health-related quality of life of older adults. METHODS This population-based cross-sectional study is part of the Survey on Health, Well-Being, and Aging (SABE). The sample was composed by 911 older adults from Sao Paulo, SP, Southeastern Brazil. Structural equation modeling was performed to assess the mediator effect of religiousness on the relationship between selected variables and health-related quality of life of older adults, with models for men and women. The independent variables were: age, education, family functioning and multimorbidity. The outcome variable was health-related quality of life of older adults, measured by SF-12 (physical and mental components). The mediator variables were organizational, non-organizational and intrinsic religiousness. Cronbach’s alpha values were: physical component = 0.85; mental component = 0.80; intrinsic religiousness = 0.89 and family APGAR (Adaptability, Partnership, Growth, Affection, and Resolve) = 0.91. RESULTS Higher levels of organizational and intrinsic religiousness were associated with better physical and mental components. Higher education, better family functioning and fewer diseases contributed directly to improved performance in physical and mental components, regardless of religiousness. For women, organizational religiousness mediated the relationship between age and physical (β = 2.401, p < 0.01) and mental (β = 1.663, p < 0.01) components. For men, intrinsic religiousness mediated the relationship between education and mental component (β = 7.158, p < 0.01). CONCLUSIONS Organizational and intrinsic religiousness had a beneficial effect on the relationship between age, education and health-related quality of life of these older adults.

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