scholarly journals The impact of pediatric nephrotic syndrome on parents′ health-related quality of life and family functioning: An assessment made by the PedsQL 4.0 family impact module

2015 ◽  
Vol 26 (2) ◽  
pp. 285 ◽  
Author(s):  
Kirtisudha Mishra ◽  
Smita Ramachandran ◽  
Saima Firdaus ◽  
Bimbadhar Rath
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Family Functioning ◽  
Family Impact ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Pedsql 4.0 ◽  
The Impact

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.

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.

Pediatric-onset multiple sclerosis is associated with reduced parental health–related quality of life and family functioning

2018 ◽  
Vol 25 (12) ◽  
pp. 1661-1672 ◽  
Author(s):  
Julia O’Mahony ◽  
Ruth Ann Marrie ◽  
Audrey Laporte ◽  
Amit Bar-Or ◽  
E Ann Yeh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Family Functioning ◽  
Disease Onset ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Background: Diagnosis of multiple sclerosis (MS) during childhood has the potential to impact the affected child’s self-perception and the health-related quality of life (HRQoL) of the family. Objective: To evaluate the impact of chronic disease, in children ascertained as having MS and their families, when compared to those with monophasic acquired demyelinating syndrome (monoADS). Methods: In a national prospective cohort study of pediatric acquired demyelinating syndromes (ADS), the HRQoL of children and their families was captured using the Pediatric Quality of Life Inventory (PedsQL™) Modules. Results: Participants (58 MS; 178 monoADS) provided cross-sectional HRQoL data a median (interquartile range (IQR)) of 4.1 (2.0–6.0) years after disease onset. The HRQoL of parents of children with MS and their family functioning was lower when compared to that of parents and families of children with monoADS (both p < 0.001); parents of children with MS reported greater emotional dysfunction, worry, worse communication, and lower family functioning irrespective of clinical disease activity. Self-reports of the MS and monoADS participants did not suggest a difference in overall HRQoL or fatigue after adjusting for age of the child at the time of assessment. Conclusion: While children with MS did not self-report lower HRQoL compared to children who experienced monoADS, the diagnosis of MS during childhood was negatively associated with parental HRQoL and family functioning.

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 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.

ACCESSIBLE HOUSING AND HEALTH-RELATED QUALITY OF LIFE: MEASUREMENTS OF WELLBEING OUTCOMES FOLLOWING HOME MODIFICATIONS

2016 ◽  
Vol 10 (2) ◽  
pp. 38 ◽  
Author(s):  
Phillippa Carnemolla ◽  
Catherine Bridge
Keyword(s):  
Quality Of Life ◽  
Mixed Method ◽  
Exploratory Research ◽  
Health Related Quality ◽  
Care Giving ◽  
Home Modifications ◽  
Related Quality ◽  
Health Related ◽  
The Impact

The multi-dimensional relationship between housing and population health is now well recognised internationally, across both developing and developed nations. This paper examines a dimension within the housing and health relationship – accessibility – that to date has been considered difficult to measure. This paper reports on the mixed method results of larger mixed-method, exploratory study designed to measure the impact of home modifications on Health-Related Quality of Life, supported by qualitative data of recipients’ experiences of home modifications. Data was gathered from 157 Australian HACC clients, who had received home modifications. Measurements were taken for both before and after home modifications and reveal that home modifications were associated with an average 40% increase in Health-Related Quality of Life levels. The qualitative results revealed that participants positively associated home modifications across six effect themes: increased safety and confidence, improved mobility at home, increased independence, supported care-giving role, increased social participation, and ability to return home from hospital. This exploratory research gives an insight into the potential for accessible architecture to impact improvements in community health and wellbeing.

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