Kamila Castro, Camila Kümmel Duarte, Eduarda Silva, Laura Hoffmann, Jenifer Lopes Borchardt, Laura Pohl, Josiane Luçardo, Myrella Lapschies, Andreia Morales Cascaes, Ana Amélia Freitas-Vilela, Adriane Cenci, Juliana S. Vaz
{"title":"Quality of Life in Autism: A Systematic Review and Meta-Analysis of Patients and Caregivers","authors":"Kamila Castro, Camila Kümmel Duarte, Eduarda Silva, Laura Hoffmann, Jenifer Lopes Borchardt, Laura Pohl, Josiane Luçardo, Myrella Lapschies, Andreia Morales Cascaes, Ana Amélia Freitas-Vilela, Adriane Cenci, Juliana S. Vaz","doi":"10.1002/aur.70348","DOIUrl":null,"url":null,"abstract":"<p>Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition associated with significant challenges in daily functioning and well-being. Caregivers often experience substantial psychological and physical burden. However, comprehensive synthesis of quality of life (QoL) outcomes for both individuals with ASD and their caregivers remains limited. This study evaluated QoL in individuals with ASD and their caregivers and examined key psychological, social, and economic determinants. A systematic review and meta-analysis were conducted following PRISMA guidelines (PROSPERO: CRD42024538872). PubMed, Scopus, Embase, PsycINFO, and preprint repositories were searched for studies published between January 2013 and July 2025. Eligible studies assessed QoL using validated instruments in individuals with ASD aged ≤ 19 years and/or their caregivers. Random-effects meta-analysis was used to estimate pooled mean differences. Of 14,368 records identified, 216 studies were included. Quantitative meta-analyses included up to 173 studies, depending on the outcome and availability of comparable data. Individuals with ASD scored 21.7 points lower than peers (95% CI: −26.9 to −16.5; <i>p</i> < 0.0001). Caregivers scored 13.64 points lower than controls (95% CI: −19.21 to −8.06; <i>p</i> < 0.0001). Emotional and social domains were most affected. Higher Human Development Index was associated with better QoL. QoL is markedly reduced in individuals with ASD and their caregivers, underscoring the need for multidimensional and equitable interventions.</p>","PeriodicalId":131,"journal":{"name":"Autism Research","volume":"19 10","pages":""},"PeriodicalIF":3.9000,"publicationDate":"2026-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.70348","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Autism Research","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/aur.70348","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2026/8/24 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"BEHAVIORAL SCIENCES","Score":null,"Total":0}
引用次数: 0
Abstract
Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition associated with significant challenges in daily functioning and well-being. Caregivers often experience substantial psychological and physical burden. However, comprehensive synthesis of quality of life (QoL) outcomes for both individuals with ASD and their caregivers remains limited. This study evaluated QoL in individuals with ASD and their caregivers and examined key psychological, social, and economic determinants. A systematic review and meta-analysis were conducted following PRISMA guidelines (PROSPERO: CRD42024538872). PubMed, Scopus, Embase, PsycINFO, and preprint repositories were searched for studies published between January 2013 and July 2025. Eligible studies assessed QoL using validated instruments in individuals with ASD aged ≤ 19 years and/or their caregivers. Random-effects meta-analysis was used to estimate pooled mean differences. Of 14,368 records identified, 216 studies were included. Quantitative meta-analyses included up to 173 studies, depending on the outcome and availability of comparable data. Individuals with ASD scored 21.7 points lower than peers (95% CI: −26.9 to −16.5; p < 0.0001). Caregivers scored 13.64 points lower than controls (95% CI: −19.21 to −8.06; p < 0.0001). Emotional and social domains were most affected. Higher Human Development Index was associated with better QoL. QoL is markedly reduced in individuals with ASD and their caregivers, underscoring the need for multidimensional and equitable interventions.
期刊介绍:
AUTISM RESEARCH will cover the developmental disorders known as Pervasive Developmental Disorders (or autism spectrum disorders – ASDs). The Journal focuses on basic genetic, neurobiological and psychological mechanisms and how these influence developmental processes in ASDs.