Xia Wang, Danny Junyi Tan, Lejing Guan, Yifei Shao, Jingjing Wang, Chunyue Feng, Haidong Fu, Huijun Shen, Xiujuan Zhu, Abdul Rafay, Jianhua Mao, Guannan Bai
{"title":"中国特发性肾病综合征患儿及其护理人员的健康相关生活质量评估。","authors":"Xia Wang, Danny Junyi Tan, Lejing Guan, Yifei Shao, Jingjing Wang, Chunyue Feng, Haidong Fu, Huijun Shen, Xiujuan Zhu, Abdul Rafay, Jianhua Mao, Guannan Bai","doi":"10.1186/s12955-024-02310-6","DOIUrl":null,"url":null,"abstract":"<p><strong>Aims: </strong>The primary aim of this study was to characterize the health-related quality of life (HRQoL) and identify the associated factors among children aged 2 to 18 in China diagnosed with idiopathic nephrotic syndrome (INS). Additionally, the study aimed to evaluate the HRQoL and caregiving burden of their caregivers and investigate the correlation between the HRQoL of the children and that of their caregivers.</p><p><strong>Methods: </strong>This study recruited 181 children diagnosed with INS from Children's Hospital, Zhejiang University School of Medicine in China. The proxy-reported PedsQL Generic Core Module (PedsQL™ 4.0 GCM) was used to measure the HRQoL of children, and the EuroQol five-dimensional questionnaire, five-level version (EQ-5D-5L) was applied to measure caregivers' HRQoL. Differences in scale scores and total scores of PedsQL™ 4.0 GCM were assessed using t-tests and one-way ANOVA. Multivariate linear regression analysis was used to identify the factors associated with children's HRQoL. Pearson correlation analysis evaluated the correlation between children's HRQoL and caregiver's HRQoL.</p><p><strong>Results: </strong>HRQoL of Children with INS declines with increasing age, and children aged 5-18 had lower scores in physical functioning, emotional functioning, school functioning, psychosocial health summary score, and total PedsQL™ 4.0 GCM score compared to healthy children. Various factors, including the mother filling out the questionnaire, the father being unemployed, and the use of other medications except for steroids, were associated with worse HRQoL of children (p values < 0.05). Additionally, a correlation exists between children's HRQoL and their caregivers' HRQoL.</p><p><strong>Conclusion: </strong>This study evaluated the HRQoL of children aged 2-18 years diagnosed with INS in China, along with the HRQoL of their caregivers. Multiple factors potentially influence the HRQoL of children. A significant correlation was observed between the HRQoL of children and their caregivers, who frequently experienced varying levels of caregiving burden. Therefore, it is recommended that healthcare professionals prioritize optimizing HRQoL for children with INS and their caregivers.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"94"},"PeriodicalIF":3.2000,"publicationDate":"2024-10-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11523807/pdf/","citationCount":"0","resultStr":"{\"title\":\"Assessment of health-related quality of life of children with idiopathic nephrotic syndrome and their caregivers in China.\",\"authors\":\"Xia Wang, Danny Junyi Tan, Lejing Guan, Yifei Shao, Jingjing Wang, Chunyue Feng, Haidong Fu, Huijun Shen, Xiujuan Zhu, Abdul Rafay, Jianhua Mao, Guannan Bai\",\"doi\":\"10.1186/s12955-024-02310-6\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Aims: </strong>The primary aim of this study was to characterize the health-related quality of life (HRQoL) and identify the associated factors among children aged 2 to 18 in China diagnosed with idiopathic nephrotic syndrome (INS). Additionally, the study aimed to evaluate the HRQoL and caregiving burden of their caregivers and investigate the correlation between the HRQoL of the children and that of their caregivers.</p><p><strong>Methods: </strong>This study recruited 181 children diagnosed with INS from Children's Hospital, Zhejiang University School of Medicine in China. The proxy-reported PedsQL Generic Core Module (PedsQL™ 4.0 GCM) was used to measure the HRQoL of children, and the EuroQol five-dimensional questionnaire, five-level version (EQ-5D-5L) was applied to measure caregivers' HRQoL. Differences in scale scores and total scores of PedsQL™ 4.0 GCM were assessed using t-tests and one-way ANOVA. Multivariate linear regression analysis was used to identify the factors associated with children's HRQoL. Pearson correlation analysis evaluated the correlation between children's HRQoL and caregiver's HRQoL.</p><p><strong>Results: </strong>HRQoL of Children with INS declines with increasing age, and children aged 5-18 had lower scores in physical functioning, emotional functioning, school functioning, psychosocial health summary score, and total PedsQL™ 4.0 GCM score compared to healthy children. Various factors, including the mother filling out the questionnaire, the father being unemployed, and the use of other medications except for steroids, were associated with worse HRQoL of children (p values < 0.05). Additionally, a correlation exists between children's HRQoL and their caregivers' HRQoL.</p><p><strong>Conclusion: </strong>This study evaluated the HRQoL of children aged 2-18 years diagnosed with INS in China, along with the HRQoL of their caregivers. Multiple factors potentially influence the HRQoL of children. A significant correlation was observed between the HRQoL of children and their caregivers, who frequently experienced varying levels of caregiving burden. Therefore, it is recommended that healthcare professionals prioritize optimizing HRQoL for children with INS and their caregivers.</p>\",\"PeriodicalId\":12980,\"journal\":{\"name\":\"Health and Quality of Life Outcomes\",\"volume\":\"22 1\",\"pages\":\"94\"},\"PeriodicalIF\":3.2000,\"publicationDate\":\"2024-10-29\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11523807/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Health and Quality of Life Outcomes\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1186/s12955-024-02310-6\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Health and Quality of Life Outcomes","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1186/s12955-024-02310-6","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
Assessment of health-related quality of life of children with idiopathic nephrotic syndrome and their caregivers in China.
Aims: The primary aim of this study was to characterize the health-related quality of life (HRQoL) and identify the associated factors among children aged 2 to 18 in China diagnosed with idiopathic nephrotic syndrome (INS). Additionally, the study aimed to evaluate the HRQoL and caregiving burden of their caregivers and investigate the correlation between the HRQoL of the children and that of their caregivers.
Methods: This study recruited 181 children diagnosed with INS from Children's Hospital, Zhejiang University School of Medicine in China. The proxy-reported PedsQL Generic Core Module (PedsQL™ 4.0 GCM) was used to measure the HRQoL of children, and the EuroQol five-dimensional questionnaire, five-level version (EQ-5D-5L) was applied to measure caregivers' HRQoL. Differences in scale scores and total scores of PedsQL™ 4.0 GCM were assessed using t-tests and one-way ANOVA. Multivariate linear regression analysis was used to identify the factors associated with children's HRQoL. Pearson correlation analysis evaluated the correlation between children's HRQoL and caregiver's HRQoL.
Results: HRQoL of Children with INS declines with increasing age, and children aged 5-18 had lower scores in physical functioning, emotional functioning, school functioning, psychosocial health summary score, and total PedsQL™ 4.0 GCM score compared to healthy children. Various factors, including the mother filling out the questionnaire, the father being unemployed, and the use of other medications except for steroids, were associated with worse HRQoL of children (p values < 0.05). Additionally, a correlation exists between children's HRQoL and their caregivers' HRQoL.
Conclusion: This study evaluated the HRQoL of children aged 2-18 years diagnosed with INS in China, along with the HRQoL of their caregivers. Multiple factors potentially influence the HRQoL of children. A significant correlation was observed between the HRQoL of children and their caregivers, who frequently experienced varying levels of caregiving burden. Therefore, it is recommended that healthcare professionals prioritize optimizing HRQoL for children with INS and their caregivers.
期刊介绍：
Health and Quality of Life Outcomes is an open access, peer-reviewed, journal offering high quality articles, rapid publication and wide diffusion in the public domain.
Health and Quality of Life Outcomes considers original manuscripts on the Health-Related Quality of Life (HRQOL) assessment for evaluation of medical and psychosocial interventions. It also considers approaches and studies on psychometric properties of HRQOL and patient reported outcome measures, including cultural validation of instruments if they provide information about the impact of interventions. The journal publishes study protocols and reviews summarising the present state of knowledge concerning a particular aspect of HRQOL and patient reported outcome measures. Reviews should generally follow systematic review methodology. Comments on articles and letters to the editor are welcome.
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