BACKGROUND Tourette syndrome(TS)is recognized as a neurodevelopmental disorder profoundly influenced by familial factors,particularly family functioning.However,the relationship among family functioning,tic severity,a...BACKGROUND Tourette syndrome(TS)is recognized as a neurodevelopmental disorder profoundly influenced by familial factors,particularly family functioning.However,the relationship among family functioning,tic severity,and quality of life in individuals with TS during childhood and adolescence remains unclear.We hypothesized that family functioning plays a role in the association between the severity of TS and quality of life in children.AIM To determine the role of family functioning in the relationship between TS severity and quality of life.METHODS This study enrolled 139 children(male/female=113/26)with TS.We assessed tic severity using the Yale Global Tic Severity Scale,quality of life via the Tourette Syndrome Quality of Life Scale,and family functioning through the Family Assessment Device.Our analysis focused on correlating these measures and exploring the mediating role of family functioning in the relationship between tic severity and quality of life.Additionally,we examined if this mediating effect varied by gender or the presence of comorbidity.RESULTS We found that family communication dysfunction had a significant mediating effect between tic severity and both psychological symptoms(indirect effect:Β=0.0038,95%confidence interval:0.0006-0.0082)as well as physical and activities of daily living impairment(indirect effect:Β=0.0029,95%confidence interval:0.0004-0.0065).For vocal tic severity,this mediation was found to be even more pronounced.Additionally,in male participants and those without attention deficit hyperactivity disorder,the mediating effect of family communication dysfunction was still evident.CONCLUSION Our study highlights the impact of family functioning on the tic severity and the quality of life in children.This relationship is influenced by gender and comorbid conditions like attention deficit hyperactivity disorder.展开更多
The major aim of the current study is to understand health related quality of life (HRQoL) domains from children’s own perspective. Specifically, we aim to determine the HRQoL in childhood chronic illnesses and to co...The major aim of the current study is to understand health related quality of life (HRQoL) domains from children’s own perspective. Specifically, we aim to determine the HRQoL in childhood chronic illnesses and to compare scores with healthy children. A cross-sectional study design with a total of 149 chronically ill children and 162 healthy participants was consecutively enrolled in this study. The Arabic-PedsQLTM-Version 0.4 Scales were used to assess HRQoL in both groups. Results showed that the chronically ill children reported more problems with physical, emotional and school functioning (all significant at展开更多
Background:Refractive errors,particularly myopia,are the leading visual disorders worldwide,significantly affecting the quality of life(QOL)even after correction.This scoping review focuses on health-related quality o...Background:Refractive errors,particularly myopia,are the leading visual disorders worldwide,significantly affecting the quality of life(QOL)even after correction.This scoping review focuses on health-related quality of life(HRQOL)measurements for children and adolescents with refractive errors.Main text:We explored generic and disease-specific HRQOL tools,examining their content,psychometric prop-erties,and the impact of various interventions on QOL.Two English databases—PubMed,Embase,and one Chinese database,CNKI,were searched for relevant studies published from January 2001 to October 2023.In-clusion criteria encompassed studies using standardized instruments to assess the QOL of children aged 0–18 with refractive errors.The review compares prevalent HRQOL measurements,analyzes children's refractive error as-sessments,and discusses intervention effects on patient QOL.Conclusions:The study underlines the necessity of developing disease-specific QOL instruments for very young children and serves as a practical guide for researchers in this field.The findings advocate for a targeted approach in HRQOL assessment among the pediatric population,identifying critical gaps in current methodologies.展开更多
Although refugee adolescents and children are recognised as a health risk population, few studies have explored their Health-related Quality of Life (HRQOL). The present study investigated 1) the sociodemographic pred...Although refugee adolescents and children are recognised as a health risk population, few studies have explored their Health-related Quality of Life (HRQOL). The present study investigated 1) the sociodemographic predictors of HRQOL such as ethnicity, trauma exposure, and length of residency in Australia in a multiethnic paediatric population with refugee experiences and 2) the relationship between mental healthcare utilisation and HRQOL. Method: Participants were 458 adolescents and children, aged 4 - 17 years, living in South Australia. Parents provided data across the sample and adolescents also completed questionnaires. Overall HRQOL and its composite functional dimensions were assessed using the Paediatric Quality of Life (PedsQL) instrument. Questions from the Child and Adolescent Component of the Australian National Survey of Mental Health and Wellbeing were used to assess service utilisation. Results: Migration region/ethnicity predicted better HRQOL as well as physical, emotional and psychosocial functioning for both children and adolescents. African youths indicated higher HRQOL than those from the former Yugoslavia and the Middle East/South Asia respectively. Pre-migration trauma exposure was associated with lower HRQOL;and longer stay in Australia was related to lower emotional functioning in children. There was a negative association between healthcare service utilisation and PedsQL scores, with participants accessing services demonstrating lower HRQOL. Conclusion: Using more rigorous methods, future research is needed to investigate additional sociodemographic predictors of HRQOL, and protective/risk factors that impact on HRQOL of young refugees.展开更多
Background: Health related quality of life (HRQOL) has become a field of extensive research involving children and adolescents with diabetes. There are no HRQOL instruments designed or adapted for the Arabic culture a...Background: Health related quality of life (HRQOL) has become a field of extensive research involving children and adolescents with diabetes. There are no HRQOL instruments designed or adapted for the Arabic culture and language. The objectives of the study are to test the Arabic translated version of the PedsQLTM 4.0 Generic Core Scales (GCS) and the PedsQLTM 3.0 Diabetes Module (DM) in children and adolescents with type 1 diabetes (T1DM) in Kuwait and analyse their psychometric properties. Methods: After the process of translation, committee review and pre-testing (linguistic validation), 131 children and adolescents with and 104 without T1DM, with their parents completed the Arabic version of GCS. Those with T1DM completed the Arabic DM. Demographic and diabetes-related data were collected using specially designed questionnaires. Internal consistency was checked by Cronbach’s alpha coefficient. The intraclass correlations coefficient, celling and floor effects and construct validity were assessed to determine the psychometric properties of both instruments. Results: Cronbach’s alpha of the child self-report and parent proxy-report was greater than 0.70, for both instruments, indicating internal consistency reliability. Items of both instruments had minimal missing responses, and required a brief time (5 - 7 minutes) to finish indicating their feasibility. No floor effect was demonstrated. Ceiling effect ranged from 5.8% to 15.8%. The GCS distinguished between healthy and diabetic children. The intraclass correlation coefficient (ICC) between child self-report and parent proxy-report of GCS scores showed good to excellent agreement, p < 0.001. However, in the DM reports, the correlation was lower, but still significant. Girls reported lower HRQOL scores in worries and communication subscales of the diabetes module than boys, p < 0.05. Conclusions: The Arabic version of the PedsQL GCS and PedsQL DM showed sufficient feasibility, reliability and validity to be used for research purposes in public health setting for children 2 - 18 years old and their parents.展开更多
Background Chronic urticaria(CU)has been shown to impact patients'quality of life negatively and may coexist with psychiatric disorders.We systematically reviewed the published evidence of comorbid psychiatric dis...Background Chronic urticaria(CU)has been shown to impact patients'quality of life negatively and may coexist with psychiatric disorders.We systematically reviewed the published evidence of comorbid psychiatric disorders in children and adolescents with CU.Methods A systematic review of studies published until February 2022 in PubMed,Google Scholar,and Scopus was performed.An a priori set of inclusion criteria was predefined for the studies to be included:(1)clear distinction between urticaria and other allergies;(2)precise distinction between acute and CU;(3)participants younger than 18 years old,exclusively;(4)use of appropriate standardized questionnaires,psychometric tools,and standard diagnostic nomenclature for the mental health and behavioral disorders diagnosis;and(5)manuscripts written or published in the English language.Results Our search identified 582 potentially relevant papers.Only eight of them satisfied the inclusion criteria.Quantita-tive meta-analysis was not deemed appropriate,given the lack of relevant randomized control trials,the small number of relevant shortlisted,the small sample size of the patients included in each study,and the remarkable heterogeneity of the studies'protocols.Conclusions The included studies suggest an increased incidence of psychopathology among children and adolescents with CU as opposed to healthy age-matched individuals,but the data are scarce.Further research is required to clarify whether psychopathology is just a comorbid entity,the cause,or the consequence of CU.Meanwhile an interdisciplinary collaboration between allergists/dermatologists and psychiatrists is expected to substantially minimize CU burden and improve patients'quality of life.展开更多
目的探究基于个案管理模式的渐进性康复护理应用于全面性发育迟缓患儿中的临床效果。方法回顾性分析2022年2—12月厦门市妇幼保健院100例全面性发育迟缓患儿临床资料,按编号单双数将其分为对照组(50例)和研究组(50例)。对照组给予常规...目的探究基于个案管理模式的渐进性康复护理应用于全面性发育迟缓患儿中的临床效果。方法回顾性分析2022年2—12月厦门市妇幼保健院100例全面性发育迟缓患儿临床资料,按编号单双数将其分为对照组(50例)和研究组(50例)。对照组给予常规康复护理,研究组实施个案管理模式的渐进性康复护理。对比两组发育商指标、活动能力指标以及儿童生活质量普适性核心评定量表(universal core rating scale for children’s quality of life,PedsQL^(TM)4.0)评分情况。结果干预后,研究组的发育商指标言语功能、精细运动及粗大运动的评分高于对照组(P<0.05);研究组的日常活动能力及口脸活动能力指标评分高于对照组(P<0.05);研究组PedsQL^(TM)4.0评分高于对照组(P<0.05)。结论基于个案管理模式的渐进性康复护理应用于全面性发育迟缓患儿中能有效改善发育商,提升活动能力,提高生活质量。展开更多
目的:评价学龄前儿童口腔健康影响程度量表(The Early Childhood Oral Health Impact Scale,ECOHIS)中文版的信度和效度。方法:对ECOHIS进行初译、回译、质量评价、文化调适和预评估,形成ECOHIS中文版,进而将其应用于成都市两部分人群,...目的:评价学龄前儿童口腔健康影响程度量表(The Early Childhood Oral Health Impact Scale,ECOHIS)中文版的信度和效度。方法:对ECOHIS进行初译、回译、质量评价、文化调适和预评估,形成ECOHIS中文版,进而将其应用于成都市两部分人群,一部分为随机选择的成都市2所幼儿园的200名学龄前儿童;另一部分是在四川大学华西口腔医院儿童牙病科就诊的100例3~5岁患儿。通过这些儿童的监护人完成问卷调查,最终对调查结果进行统计学分析,考评量表的信度和效度。结果:①共回收有效问卷292份,有效问卷的回收率为97.3%;②信度—量表总的克朗巴赫α系数为0.899,Guttman分半信度系数为0.799,表格之间相关性r=0.666;③结构效度—经过验证性因子分析,提取3个因子,累积贡献率达63.87%,显示量表存在预想的连带关系和逻辑关系;判别效度—所有条目均能区分幼儿园普通儿童和患儿的生命质量差异(P值均<0.01)。结论:ECOHIS中文版通过严格的性能测试,具有良好的信度和效度,可在我国学龄前儿童中推广应用。展开更多
基金Supported by the National Natural Science Foundation of China,No.82171538the Beijing High Level Public Health Technology Talent Construction Project,No.Discipline Leader-01-07.
文摘BACKGROUND Tourette syndrome(TS)is recognized as a neurodevelopmental disorder profoundly influenced by familial factors,particularly family functioning.However,the relationship among family functioning,tic severity,and quality of life in individuals with TS during childhood and adolescence remains unclear.We hypothesized that family functioning plays a role in the association between the severity of TS and quality of life in children.AIM To determine the role of family functioning in the relationship between TS severity and quality of life.METHODS This study enrolled 139 children(male/female=113/26)with TS.We assessed tic severity using the Yale Global Tic Severity Scale,quality of life via the Tourette Syndrome Quality of Life Scale,and family functioning through the Family Assessment Device.Our analysis focused on correlating these measures and exploring the mediating role of family functioning in the relationship between tic severity and quality of life.Additionally,we examined if this mediating effect varied by gender or the presence of comorbidity.RESULTS We found that family communication dysfunction had a significant mediating effect between tic severity and both psychological symptoms(indirect effect:Β=0.0038,95%confidence interval:0.0006-0.0082)as well as physical and activities of daily living impairment(indirect effect:Β=0.0029,95%confidence interval:0.0004-0.0065).For vocal tic severity,this mediation was found to be even more pronounced.Additionally,in male participants and those without attention deficit hyperactivity disorder,the mediating effect of family communication dysfunction was still evident.CONCLUSION Our study highlights the impact of family functioning on the tic severity and the quality of life in children.This relationship is influenced by gender and comorbid conditions like attention deficit hyperactivity disorder.
文摘The major aim of the current study is to understand health related quality of life (HRQoL) domains from children’s own perspective. Specifically, we aim to determine the HRQoL in childhood chronic illnesses and to compare scores with healthy children. A cross-sectional study design with a total of 149 chronically ill children and 162 healthy participants was consecutively enrolled in this study. The Arabic-PedsQLTM-Version 0.4 Scales were used to assess HRQoL in both groups. Results showed that the chronically ill children reported more problems with physical, emotional and school functioning (all significant at
基金the Natural Science Foundation of Zhejiang Province under grant number LQ22C070004.
文摘Background:Refractive errors,particularly myopia,are the leading visual disorders worldwide,significantly affecting the quality of life(QOL)even after correction.This scoping review focuses on health-related quality of life(HRQOL)measurements for children and adolescents with refractive errors.Main text:We explored generic and disease-specific HRQOL tools,examining their content,psychometric prop-erties,and the impact of various interventions on QOL.Two English databases—PubMed,Embase,and one Chinese database,CNKI,were searched for relevant studies published from January 2001 to October 2023.In-clusion criteria encompassed studies using standardized instruments to assess the QOL of children aged 0–18 with refractive errors.The review compares prevalent HRQOL measurements,analyzes children's refractive error as-sessments,and discusses intervention effects on patient QOL.Conclusions:The study underlines the necessity of developing disease-specific QOL instruments for very young children and serves as a practical guide for researchers in this field.The findings advocate for a targeted approach in HRQOL assessment among the pediatric population,identifying critical gaps in current methodologies.
文摘Although refugee adolescents and children are recognised as a health risk population, few studies have explored their Health-related Quality of Life (HRQOL). The present study investigated 1) the sociodemographic predictors of HRQOL such as ethnicity, trauma exposure, and length of residency in Australia in a multiethnic paediatric population with refugee experiences and 2) the relationship between mental healthcare utilisation and HRQOL. Method: Participants were 458 adolescents and children, aged 4 - 17 years, living in South Australia. Parents provided data across the sample and adolescents also completed questionnaires. Overall HRQOL and its composite functional dimensions were assessed using the Paediatric Quality of Life (PedsQL) instrument. Questions from the Child and Adolescent Component of the Australian National Survey of Mental Health and Wellbeing were used to assess service utilisation. Results: Migration region/ethnicity predicted better HRQOL as well as physical, emotional and psychosocial functioning for both children and adolescents. African youths indicated higher HRQOL than those from the former Yugoslavia and the Middle East/South Asia respectively. Pre-migration trauma exposure was associated with lower HRQOL;and longer stay in Australia was related to lower emotional functioning in children. There was a negative association between healthcare service utilisation and PedsQL scores, with participants accessing services demonstrating lower HRQOL. Conclusion: Using more rigorous methods, future research is needed to investigate additional sociodemographic predictors of HRQOL, and protective/risk factors that impact on HRQOL of young refugees.
文摘Background: Health related quality of life (HRQOL) has become a field of extensive research involving children and adolescents with diabetes. There are no HRQOL instruments designed or adapted for the Arabic culture and language. The objectives of the study are to test the Arabic translated version of the PedsQLTM 4.0 Generic Core Scales (GCS) and the PedsQLTM 3.0 Diabetes Module (DM) in children and adolescents with type 1 diabetes (T1DM) in Kuwait and analyse their psychometric properties. Methods: After the process of translation, committee review and pre-testing (linguistic validation), 131 children and adolescents with and 104 without T1DM, with their parents completed the Arabic version of GCS. Those with T1DM completed the Arabic DM. Demographic and diabetes-related data were collected using specially designed questionnaires. Internal consistency was checked by Cronbach’s alpha coefficient. The intraclass correlations coefficient, celling and floor effects and construct validity were assessed to determine the psychometric properties of both instruments. Results: Cronbach’s alpha of the child self-report and parent proxy-report was greater than 0.70, for both instruments, indicating internal consistency reliability. Items of both instruments had minimal missing responses, and required a brief time (5 - 7 minutes) to finish indicating their feasibility. No floor effect was demonstrated. Ceiling effect ranged from 5.8% to 15.8%. The GCS distinguished between healthy and diabetic children. The intraclass correlation coefficient (ICC) between child self-report and parent proxy-report of GCS scores showed good to excellent agreement, p < 0.001. However, in the DM reports, the correlation was lower, but still significant. Girls reported lower HRQOL scores in worries and communication subscales of the diabetes module than boys, p < 0.05. Conclusions: The Arabic version of the PedsQL GCS and PedsQL DM showed sufficient feasibility, reliability and validity to be used for research purposes in public health setting for children 2 - 18 years old and their parents.
文摘Background Chronic urticaria(CU)has been shown to impact patients'quality of life negatively and may coexist with psychiatric disorders.We systematically reviewed the published evidence of comorbid psychiatric disorders in children and adolescents with CU.Methods A systematic review of studies published until February 2022 in PubMed,Google Scholar,and Scopus was performed.An a priori set of inclusion criteria was predefined for the studies to be included:(1)clear distinction between urticaria and other allergies;(2)precise distinction between acute and CU;(3)participants younger than 18 years old,exclusively;(4)use of appropriate standardized questionnaires,psychometric tools,and standard diagnostic nomenclature for the mental health and behavioral disorders diagnosis;and(5)manuscripts written or published in the English language.Results Our search identified 582 potentially relevant papers.Only eight of them satisfied the inclusion criteria.Quantita-tive meta-analysis was not deemed appropriate,given the lack of relevant randomized control trials,the small number of relevant shortlisted,the small sample size of the patients included in each study,and the remarkable heterogeneity of the studies'protocols.Conclusions The included studies suggest an increased incidence of psychopathology among children and adolescents with CU as opposed to healthy age-matched individuals,but the data are scarce.Further research is required to clarify whether psychopathology is just a comorbid entity,the cause,or the consequence of CU.Meanwhile an interdisciplinary collaboration between allergists/dermatologists and psychiatrists is expected to substantially minimize CU burden and improve patients'quality of life.
文摘目的探究基于个案管理模式的渐进性康复护理应用于全面性发育迟缓患儿中的临床效果。方法回顾性分析2022年2—12月厦门市妇幼保健院100例全面性发育迟缓患儿临床资料,按编号单双数将其分为对照组(50例)和研究组(50例)。对照组给予常规康复护理,研究组实施个案管理模式的渐进性康复护理。对比两组发育商指标、活动能力指标以及儿童生活质量普适性核心评定量表(universal core rating scale for children’s quality of life,PedsQL^(TM)4.0)评分情况。结果干预后,研究组的发育商指标言语功能、精细运动及粗大运动的评分高于对照组(P<0.05);研究组的日常活动能力及口脸活动能力指标评分高于对照组(P<0.05);研究组PedsQL^(TM)4.0评分高于对照组(P<0.05)。结论基于个案管理模式的渐进性康复护理应用于全面性发育迟缓患儿中能有效改善发育商,提升活动能力,提高生活质量。
文摘目的:评价学龄前儿童口腔健康影响程度量表(The Early Childhood Oral Health Impact Scale,ECOHIS)中文版的信度和效度。方法:对ECOHIS进行初译、回译、质量评价、文化调适和预评估,形成ECOHIS中文版,进而将其应用于成都市两部分人群,一部分为随机选择的成都市2所幼儿园的200名学龄前儿童;另一部分是在四川大学华西口腔医院儿童牙病科就诊的100例3~5岁患儿。通过这些儿童的监护人完成问卷调查,最终对调查结果进行统计学分析,考评量表的信度和效度。结果:①共回收有效问卷292份,有效问卷的回收率为97.3%;②信度—量表总的克朗巴赫α系数为0.899,Guttman分半信度系数为0.799,表格之间相关性r=0.666;③结构效度—经过验证性因子分析,提取3个因子,累积贡献率达63.87%,显示量表存在预想的连带关系和逻辑关系;判别效度—所有条目均能区分幼儿园普通儿童和患儿的生命质量差异(P值均<0.01)。结论:ECOHIS中文版通过严格的性能测试,具有良好的信度和效度,可在我国学龄前儿童中推广应用。