Yu Yi Chan, Bryan Wei Zhi Wong, Fergus Edward Cheok, Natania Rae Xiangqin Tan, Gwyneth Kong, Zubair Amin, Yvonne Peng Mei Ng
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The study protocol was registered with PROSPERO (CRD42023413532).</p><p><strong>Results: </strong>Seventeen studies involving 3038 children with DS using various QOL measures were included: Pediatric Quality of Life Inventory (PedsQL) (8 studies), KIDSCREEN (4 studies), KidsLife (2 studies), The Netherlands Organization for Applied Scientific Research Academic Medical Center Children's QOL (2 studies) and Personal Outcome Scale (1 study). Meta-analysis on PedsQL studies compared scores between children with DS and typically developing (TD) children. Total scale score was lower in children with DS (mean 70.28, 95% confidence interval [CI] 64.31-76.24) compared to TD children (mean 88.17, 95% CI 80.50-95.83). All subdomains of PedsQL were also lower in children with DS. Within the domain of psychosocial health, children with DS had statistically significant lower social functioning (standardised mean difference -1.40, 95% CI -2.27 to -0.53) and school functioning (standardised mean difference -1.09, 95% CI -1.55 to -0.62) scores, but similar emotional functioning scores. Qualitative synthesis revealed poorer subdomain QOL compared to TD children, especially in social functioning and cognitive functioning. QOL worsened during adolescent years. Family variables (parental education and occupation) did not affect parental perception of children's QOL. Children with DS who had higher intelligent quotient had better QOL.</p><p><strong>Conclusion: </strong>Children with DS have lower caregiver-reported QOL than TD children, especially in social functioning and school functioning subdomains.</p>","PeriodicalId":502093,"journal":{"name":"Annals of the Academy of Medicine, Singapore","volume":null,"pages":null},"PeriodicalIF":2.5000,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Quality of life of children and young adults with Down syndrome from caregivers' perspective: A systematic review and meta-analysis.\",\"authors\":\"Yu Yi Chan, Bryan Wei Zhi Wong, Fergus Edward Cheok, Natania Rae Xiangqin Tan, Gwyneth Kong, Zubair Amin, Yvonne Peng Mei Ng\",\"doi\":\"10.47102/annals-acadmedsg.2023415\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Introduction: </strong>Down syndrome (DS) negatively impacts the well-being of affected individuals. 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引用次数: 0
摘要
导言：唐氏综合症（DS）会对患者的生活产生负面影响。本研究旨在从照顾者的角度，使用定量测量方法总结有关患有唐氏综合症的儿童和年轻成人生活质量（QOL）的证据，并确定影响其生活质量的因素：方法：于 2024 年 4 月 24 日在 PubMed、Embase、Web of Science 和 CINAHL 上进行数据库检索。在可行的情况下，采用随机效应模型进行元分析。所有研究均进行了定性综合。研究方案已在 PROSPERO 注册（CRD42023413532）：结果：共纳入 17 项研究，涉及 3038 名 DS 儿童，研究采用了不同的 QOL 测量方法：儿科生活质量量表（PedsQL）（8 项研究）、KIDSCREEN（4 项研究）、KidsLife（2 项研究）、荷兰应用科学研究组织学术医学中心儿童 QOL（2 项研究）和个人成果量表（1 项研究）。对儿童生活质量量表研究进行的元分析比较了 DS 儿童和发育正常（TD）儿童的得分。与 TD 儿童（平均 88.17，95% 置信区间 [CI] 80.50-95.83）相比，DS 儿童的量表总分较低（平均 70.28，95% 置信区间 [CI] 64.31-76.24）。DS儿童的儿童生活质量量表（PedsQL）的所有子域也都较低。在社会心理健康领域，DS 儿童的社会功能（标准化平均差异-1.40，95% CI -2.27至-0.53）和学校功能（标准化平均差异-1.09，95% CI -1.55至-0.62）得分显著低于其他儿童，但情绪功能得分与其他儿童相似。定性综合结果显示，与 TD 儿童相比，他们的子域 QOL 较差，尤其是在社会功能和认知功能方面。青少年时期的 QOL 有所恶化。家庭变量（父母的教育程度和职业）并不影响父母对儿童 QOL 的看法。智商较高的 DS 儿童的 QOL 更好：结论：与TD儿童相比，DS儿童的照顾者报告的QOL较低，尤其是在社会功能和学校功能方面。
Quality of life of children and young adults with Down syndrome from caregivers' perspective: A systematic review and meta-analysis.
Introduction: Down syndrome (DS) negatively impacts the well-being of affected individuals. This study aimed to summarise the evidence on quality of life (QOL) of children and young adults with DS using quantitative measures from caregivers' perspective and identify factors that affected their QOL.
Method: Database search was conducted on PubMed, Embase, Web of Science and CINAHL on 24 April 2024. Meta-analysis using random effects model was conducted where feasible. All studies underwent qualitative synthesis. The study protocol was registered with PROSPERO (CRD42023413532).
Results: Seventeen studies involving 3038 children with DS using various QOL measures were included: Pediatric Quality of Life Inventory (PedsQL) (8 studies), KIDSCREEN (4 studies), KidsLife (2 studies), The Netherlands Organization for Applied Scientific Research Academic Medical Center Children's QOL (2 studies) and Personal Outcome Scale (1 study). Meta-analysis on PedsQL studies compared scores between children with DS and typically developing (TD) children. Total scale score was lower in children with DS (mean 70.28, 95% confidence interval [CI] 64.31-76.24) compared to TD children (mean 88.17, 95% CI 80.50-95.83). All subdomains of PedsQL were also lower in children with DS. Within the domain of psychosocial health, children with DS had statistically significant lower social functioning (standardised mean difference -1.40, 95% CI -2.27 to -0.53) and school functioning (standardised mean difference -1.09, 95% CI -1.55 to -0.62) scores, but similar emotional functioning scores. Qualitative synthesis revealed poorer subdomain QOL compared to TD children, especially in social functioning and cognitive functioning. QOL worsened during adolescent years. Family variables (parental education and occupation) did not affect parental perception of children's QOL. Children with DS who had higher intelligent quotient had better QOL.
Conclusion: Children with DS have lower caregiver-reported QOL than TD children, especially in social functioning and school functioning subdomains.
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