Anomalies in Measuring Health-Related Quality of Life: Using the PedsQL 4.0™ with Children Who Have Peanut Allergy and Their Parents

2012 ◽  
Vol 8 (4) ◽  
pp. 511-518 ◽  
Author(s):  
Kimberlee M. Roy ◽  
Michael C. Roberts ◽  
Kimberly S. Canter
Keyword(s):  
Quality Of Life ◽  
Peanut Allergy ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Pedsql 4.0

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 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 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.

Health-related quality of life in Chinese boys with Duchenne muscular dystrophy and their families

2019 ◽  
Vol 23 (3) ◽  
pp. 495-506 ◽  
Author(s):  
Rui Liang ◽  
Sophelia Hoi Shan Chan ◽  
Frederick Ka Wing Ho ◽  
Oi Ching Tang ◽  
Sharon Wan Wah Cherk ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Duchenne Muscular Dystrophy ◽  
Parent Report ◽  
Self Report ◽  
Disease Stage ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Pedsql 4.0

This study aims to assess the family functioning and health-related quality of life (HRQOL) in Chinese boys with Duchenne muscular dystrophy (DMD) and their parents using Pediatric Quality-of-Life Family Impact Module ( PedsQL FIM) and Pediatric Quality-of-Life Inventory (PedsQL) 4.0. Findings from 15 families with DMD were compared with 15 unaffected families. The HRQOL, as measured by the mean PedsQL 4.0 Generic Core Scale scores for the boys with DMD were significantly lower than those of age-matched healthy boys, for overall ( p < 0.05, parent-report; p <0.001, self-report), physical ( p < 0.001, parent-report and self-report), and social ( p < 0.05, parent-report) functioning, but the emotional functioning is not affected. The parent–child concordance of our affected DMD families was generally in the moderate-to-good agreement range (intraclass correlation coefficients from 0.51 to 0.73), except for emotional (0.28) and social (0.31) functioning. The PedsQL FIM total score showed an inverse relationship with the affected child’s age (correlation coefficient: −0.55; p < 0.01) and the disease stage (correlation coefficient: −0.63; p < 0.01) confirming that parental HRQOL and overall family functioning worsened as the child increased in age with advancing disease stage.

P313 PEANUT ALLERGY BURDEN SURVEY: HEALTH-RELATED QUALITY OF LIFE AMONG ADULTS IN THE UNITED STATES

2019 ◽  
Vol 123 (5) ◽  
pp. S51
Author(s):  
A. Nowak-Wegrzyn ◽  
D. Robison ◽  
C. Birchwood ◽  
S. Tilles ◽  
K. Norrett ◽  
...  
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Peanut Allergy ◽  
The United States ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Examination of Correlates to Health-Related Quality of Life in Individuals with Fragile X Syndrome

2020 ◽  
Vol 10 (4) ◽  
pp. 213
Author(s):  
Marika C. Coffman ◽  
Rebecca C. Shaffer ◽  
Lauren M. Schmitt ◽  
Kelli C. Dominick ◽  
Ernest Pedapati ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Fragile X Syndrome ◽  
Fragile X ◽  
Parent Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Pedsql 4.0 ◽  
Degree Of Association

Health-related quality of life (HRQoL) is a multidimensional concept involving physical, psychological, social, and cognitive aspects of life. Individuals with Fragile X syndrome (FXS) experience a life-long disorder that impacts the HRQoL of the affected individual and their family. Thus, HRQoL may be an important outcome measure following intervention. However, it is yet not known whether HRQoL concerns relate to observed impairments in FXS. In the present study, we examined the nature and degree of association between HRQoL and established measures of functioning in FXS using the Parent Report for Children version of the PedsQL 4.0 Generic Core Scales and Cognitive Functioning Scale. We observed significant relationships between HRQoL a nd measures of adaptive behavior, maladaptive behaviors, and social functioning. The present study has implications for treatment outcomes for clinical trials in FXS.

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