Family impact and Health-Related Quality of Life (HRQoL) of parents and individuals with SMA

Abstract Objectives To analyse possible changes in oral health-related quality of life (OHRQoL) before and after dental treatment under dental general anaesthesia (DGA) among Austrian preschool children. Methods A consecutive sample of 89 parents of children aged 2 to 5 years, suffering from early childhood caries (ECC) and scheduled for DGA, were recruited from two locations in Austria (Vienna and Salzburg). Parents self-completed the German version of the ECOHIS before (baseline) and 4 weeks (T4) after their child’s dental treatment. The ECOHIS consists of 13 questions and is divided into two main parts, namely, the child impact section (9 items) and the family impact section (4 items). Results A total of 80 children (89%) completed a sufficient number ECOHIS questions at baseline and the follow-up assessment after 4 weeks. “Pain in the teeth, mouth, and jaws” and “difficulty eating some foods” from the child section and parents’ ratings of “feeling upset” and “guilty” were the most frequently reported impacts at baseline. The ECOHIS total score decreased significantly from a mean of 14.60 to 9.89 (p < 0.001) after DGA treatment, revealing a large effect size for the child (0.8) section, family (0.6) section, and the total score (0.8). Parents rated their child’s overall and oral health significantly higher after the DGA treatment (p < 0.001). Conclusions Significant improvements in oral health-related quality of life were observed 4 weeks after DGA in children suffering from ECC. Clinical relevance ECC has an impact on OHRQoL. Rehabilitation under general anaesthesia makes a sustainable improvement.

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

Health and Quality of Life Outcomes ◽

10.1186/s12955-021-01805-w ◽

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.

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

10.21203/rs.3.rs-211762/v1 ◽

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.

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

10.21203/rs.3.rs-98876/v2 ◽

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.

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Parents' Perceptions of the Oral Health-related Quality of Life of their Autistic Children in Iran

Journal of Clinical Pediatric Dentistry ◽

10.17796/1053-4625-42.6.3 ◽

2018 ◽

Vol 42 (6) ◽

pp. 422-426 ◽

Cited By ~ 1

Author(s):

Neda Eslami ◽

Taraneh Movahed ◽

Masoumeh Asadi

Keyword(s):

Quality Of Life ◽

Oral Health ◽

Family Impact ◽

Health Related Quality ◽

Autistic Children ◽

Normal Children ◽

Significant Difference ◽

Related Quality ◽

Health Related

Objectives: The aim of this study was to evaluate parents' perception of the oral health-related quality of life (OHRQoL) of autistic children in Iran, and to determine the quality of life of their families in relation to child' oral health status. Study design: 70 families with at least one child with autism, and 70 families with normal children were enrolled. Parents' perceptions of the OHRQoL of children were assessed using pre-validated PedsQL oral health scale questionnaire. PedsQL Family Impact Module questionnaire was also used to evaluate the impact of having an autistic child on the quality of life of their families. Both of the questionnaires were filled by parents. Parents of children with autism spectrum filled a separate questionnaire for the sibling of the autistic child. In the control families, child-reported PedsQL oral health scale questionnaire was also filled by the child himself/herself. Mann-Whitney U-test, and chi-square were used for statistical analysis. Results: There was a significant difference in the mean total score of PedsQL oral health scale questionnaire between autistics and controls. Parents of normal children reported more oral problems (p<0.001). There was not a significant difference in the mean total score of PedsQL Family Impact Module questionnaire between the families of autistics and controls in the last 7 and 30 days. Conclusion: According to parents' point of view, oral health-related quality of life of autistic children was better than normal children. However, parents of autistic children had more problems in the social and communication issues.

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