Literaturnachweis - Detailanzeige
Autor/inn/en | Bolbocean, Corneliu; Andújar, Fabiola N.; McCormack, Maria; Suter, Bernhard; Holder, J. Lloyd, Jr. |
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Titel | Health-Related Quality of Life in Pediatric Patients with Syndromic Autism and Their Caregivers |
Quelle | In: Journal of Autism and Developmental Disorders, 52 (2022) 3, S.1334-1345 (12 Seiten)
PDF als Volltext |
Zusatzinformation | ORCID (Holder, J. Lloyd, Jr.) |
Sprache | englisch |
Dokumenttyp | gedruckt; online; Zeitschriftenaufsatz |
ISSN | 0162-3257 |
DOI | 10.1007/s10803-021-05030-8 |
Schlagwörter | Children; Autism; Pervasive Developmental Disorders; Quality of Life; Patients; Genetic Disorders; Child Health; Intellectual Disability; Physical Health; Child Caregivers |
Abstract | Children with autism have a significantly lower quality of life compared with their neurotypical peers. While multiple studies have quantified the impact of autism on health-related quality of life (HRQoL) through standardized surveys such as the PedsQL, none have specifically investigated the impact of syndromic autism. Here we evaluate HRQoL in children diagnosed with three genetic disorders that strongly predispose to syndromic autism: Phelan-McDermid syndrome (PMD), Rett syndrome (RTT), and SYNGAP1-related intellectual disability (SYNGAP1-ID). We find the most severely impacted dimension is physical functioning. Strikingly, syndromic autism results in worse quality of life than other chronic disorders including idiopathic autism. This study demonstrates the utility of caregiver surveys in prioritizing phenotypes, which may be targeted as clinical endpoints for genetically defined ASDs. (As Provided). |
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Erfasst von | ERIC (Education Resources Information Center), Washington, DC |
Update | 2024/1/01 |