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

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

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.

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 Health-related quality of life: population epidemiology and concordance in Australian children aged 11–12 years and their parents

BMJ Open ◽  
2019 ◽  
Vol 9 (Suppl 3) ◽  
pp. 157-164 ◽  
Author(s):  
Max Catchpool ◽  
Lisa Gold ◽  
Anneke C Grobler ◽  
Susan A Clifford ◽  
Melissa Wake
Keyword(s):  
Quality Of Life ◽  
Child Health ◽  
Pearson Correlation ◽  
Health Related Quality ◽  
Linear Regression Models ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related ◽  
Parent Child

ObjectivesTo describe the distribution of health-related quality of life (HRQL) in a national sample of Australian children aged 11–12 years and their parents, and examine associations within parent–child dyads.DesignThe Child Health CheckPoint, a population-based cross-sectional study nested between waves 6 and 7 of the Longitudinal Study of Australian Children (LSAC).SettingAssessment centres in seven Australian cities and eight regional towns, or home visit; February 2015 to March 2016.ParticipantsOf all participating CheckPoint families (n=1874), 1853 children (49.0% girls) and 1863 parents (87.7% mothers) with HRQL data were included (1786 pairs).Outcome measuresHRQL was self-reported using preference-based (Child Health Utility 9Dimension, CHU9D) and non-preference-based (Pediatric Quality of Life, PedsQL V.4.0) measures for children and preference-based measures for parents (CHU9D; Assessment of Quality of Life 8 Dimension, AQoL-8D). Utility scores from preference-based measures were calculated using existing Australian algorithms to present a score on a 0–1 scale, where 1 represents full health. Parent–child concordance was assessed using Pearson’s correlation coefficients and adjusted linear regression models. Survey weights and methods were applied to account for LSAC’s complex sample design, stratification and clustering within postcodes.ResultsChildren’s means and SD were 0.81 (SD 0.16) for CHU9D and 78.3 (SD 13.03) for PedsQL. In adults, mean HRQL for AQoL-8D and CHU9D were 0.78 (SD 0.16) and 0.89 (SD 0.10), respectively. Mean HRQL was similar for boys and girls, but slightly higher for fathers than mothers. The Pearson correlation coefficient for parent–child CHU9D values was 0.13 (95% CI 0.09 to 0.18). Percentiles and concordance are presented for both samples for males and females separately and together.ConclusionsWe provide Australian paediatric population values for HRQL measures, and the first national CHU9D values for mid-life adults. At age 11–12 years in this relatively healthy sample, parent–child concordance in HRQL was small.

Association between eHealth Literacy and Health-Related Quality of Life among Chinese Older Adults: A Cross-Sectional Study (Preprint)

2020 ◽  
Author(s):  
Shaojie Li ◽  
Yongtian Yin ◽  
Lijun Chen ◽  
Guanghui Cui ◽  
Jiaqin Li ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Mental Component Summary ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Chinese Older Adults ◽  
Ehealth Literacy ◽  
Related Quality ◽  
Health Related

BACKGROUND Older adults’ health literacy levels are crucial to improving health outcomes and health-related quality of life (HRQoL). However, the impact of eHealth literacy on HRQoL in older adults is unclear. OBJECTIVE The aim of this study was to examine the association between eHealth literacy and HRQoL of older adults and provide reference for the development of network intervention measures related to the health quality of life of the older adults. METHODS An anonymous cross-sectional survey was conducted among 1,201 adults aged 60 or older from Jinan, China. The eHealth Literacy Scale and Short-Form Health Survey (SF-12) were used to measure eHealth literacy and HRQoL. We used linear regression to test the adjusted association between eHealth literacy and HRQoL. RESULTS Most participants (88.9%) had inadequate eHealth literacy. Lower eHealth literacy was related to older age ( F=12.618, P<.001), female gender( t=3.303, P<.01), living in rural areas( F=11.356, P<.001), having less education( F=59.084, P<.001), being unmarried, divorced or widowed( t=4.416, P<.001), having a lower family income( F=38.017, P<.001), living with others(χ2=4.319, P<.05), and not having health insurance( F=12.713, P<.001). There were significant differences across physical functioning( t=-4.862, P<.001), role- physical( t=-2.485, P<.05), bodily pain( t=-3.470, P<.01), general health( t=-4.449, P<.001), vitality( t=-3.498, P<.001), role-emotional( t=-2.654, P<.01), mental health( t=-4.150, P<.001), physical component summary( t=-6.350, P<.001) and mental component summary( t=-4.483, P<.001) between adequate eHealth literacy and inadequate eHealth literacy. After controlling for age, gender, and other covariates, adequate eHealth literacy was positively related to physical component summary ( beta=7.6, P<.001) and mental component summary(beta=4.6, P=.001). CONCLUSIONS This study showed that Chinese older adults with higher eHealth literacy were more likely to contribute to higher HRQoL. Thus, Older adults’ eHealth literacy levels need to be taken into account when formulating health education and promotion programs for older adults, especially when the expected outcome is to improve HRQoL.

Health related quality of life of rosacea patients in China assessed by DLQI and willingness to pay: Cross-Sectional Questionnaire Study (Preprint)

2020 ◽  
Author(s):  
Yaqun Huang ◽  
Sha Yan ◽  
Hongfu Xie ◽  
Ben Wang ◽  
Zhixiang Zhao ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Willingness To Pay ◽  
Disease Duration ◽  
Life Quality ◽  
Cross Sectional Study ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related

BACKGROUND Rosacea is a chronic inflammatory dermatosis with facial skin involved, leading to physical and emotional problems, which greatly affected quality of life (QoL) of patients. Dermatology Life Quality Index (DLQI) and willingness to pay (WTP) are well-established instruments assessing the health-related quality of life (HRQoL), while very few studies have been focused on this topic about rosacea in China. OBJECTIVE To investigate HRQoL in Chinese rosacea patients assessed by DLQI and WTP and investigate potential predictors for patients with HRQoL severely affected. METHODS This cross-sectional study was conducted on 973 patients with rosacea. Sociodemographic data, clinical features and DLQI were collected, and WTP was assessed by three standardized items. Multivariable logistic analysis was performed to investigate independent factors influencing QoL. RESULTS 921 questionnaires were accomplished by participants. The mean DLQI score was 11.6 (median 11). Patients were willing to pay an average of $1050.2 or € 896.2 (median $431.4 or € 368.1) for complete cure. 33.3% would like to pay more than 20% of their monthly income to achieve sustainable control. There were positive correlations between WTP with DLQI (P < .05). DLQI could be independently impacted by age (21-30 and 31-40, OR = 3.242 and 3.617, respectively), the occupational requirement of appearance (high, OR = 4.410), disease duration (< 2 years, OR = 1.582), oedema (OR = 1.844) and severity of flushing, burning, stinging and pruritus (severe, OR = 2.003, 1.981, 2.491, 2.249, respectively). There were no significant associations between WTP and most of the clinical factors. CONCLUSIONS The QoL was negatively affected and should not be ignored among rosacea patients in China. Patients aged 21-40y, having occupational requirement of appearance, with the disease duration less than 2 years, and suffering severe flushing and related symptoms were more likely to have severe or very severe limitation of QoL.

scholarly journals Health-Related Quality of Life of Persons with Direct, Indirect and No Migration Background in Germany: A Cross-Sectional Study Based on the German Socio-Economic Panel (SOEP)

2021 ◽  
Vol 18 (7) ◽  
pp. 3665
Author(s):  
Thomas Grochtdreis ◽  
Hans-Helmut König ◽  
Judith Dams
Keyword(s):  
Quality Of Life ◽  
Cross Sectional Study ◽  
Migration Background ◽  
German Population ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related ◽  
Student’S T

Global migration towards and within Europe remains high, shaping the structure of populations. Approximately 24% of the total German population had a migration background in 2017. The aim of the study was to analyze the association between migration background and health-related quality of life (HrQoL) in Germany. The analyses were based on 2014 and 2016 data of the German Socio-Economic Panel. Differences in sociodemographic characteristics between migrant and non-migrant samples were equal by employment of the entropy balancing weights. HrQoL was measured using the physical (PCS) and mental (MCS) component summary scores of the SF-12v2. Associations between PCS and MCS scores and migration background were examined using Student’s t-test. The mean PCS and MCS scores of persons with migration background (n = 8533) were 51.5 and 50.9, respectively. Persons with direct migration background had a lower PCS score (−0.55, p < 0.001) and a higher MCS score (+1.08, p < 0.001) than persons without migration background. Persons with direct migration background differed with respect to both physical and mental HrQoL from persons without migration background in the German population. Differences in HrQoL for persons with indirect migration background had p = 0.305 and p = 0.072, respectively. Causalities behind the association between direct migration background and HrQoL are to be determined.

scholarly journals Health-related quality of life in different trimesters during pregnancy

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Huailiang Wu ◽  
Weiwei Sun ◽  
Hanqing Chen ◽  
Yanxin Wu ◽  
Wenjing Ding ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pregnant Women ◽  
Demographic Data ◽  
Cross Sectional Study ◽  
University Hospital ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related

Abstract Background Pregnant women experience physical, physiological, and mental changes. Health-related quality of life (HRQoL) is a relevant indicator of psychological and physical behaviours, changing over the course of pregnancy. This study aims to assess HRQoL of pregnant women during different stages of pregnancy. Methods This cross-sectional study was performed using the The EuroQoL Group’s five-dimension five-level questionnaire (EQ-5D-5L) to assess the HRQoL of pregnant women, and demographic data were collected. This study was conducted in a regional university hospital in Guangzhou, China. Results A total of 908 pregnant women were included in this study. Pregnant women in the early 2nd trimester had the highest HRQoL. The HRQoL of pregnant women rose from the 1st trimester to the early 2nd trimester, and dropped to the bottom at the late 3rd trimester due to some physical and mental changes. Reports of pain/discomfort problem were the most common (46.0%) while self-care were the least concern. More than 10% of pregnant women in the 1st trimester had health-related problems in at least one dimension of whole five dimensions. In the whole sample, the EuroQoL Group’s visual analog scale (EQ-VAS) was 87.86 ± 9.16. Across the gestational stages, the HRQoL remained stable during the pregnancy but the highest value was observed in the 1st trimester (89.65 ± 10.13) while the lowest was in the late 3rd trimester (87.28 ± 9.13). Conclusions During pregnancy, HRQoL were associated with gestational trimesters in a certain degree. HRQoL was the highest in the early 2nd trimester and then decreased to the lowest in the late 3rd trimester due to a series of physical and psychological changes. Therefore, obstetric doctors and medical institutions should give more attention and care to pregnant women in the late 3rd trimester.

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