Brain & development · 2026
From a caregiver perspective: Quality of life of children with epilepsy and autism spectrum disorder - a single site case-control study.
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Fonseca Laura D, Carnes Sydney, Kumar Gogi
Аннотация
BACKGROUND: We aim to investigate the quality of life (QoL) in children with idiopathic generalized epilepsy (IGE) compared to children with epilepsy and autism spectrum disorder (ASD) and their respective caregiver's QOL.
METHODS: We conducted a case-control study from a single pediatric hospital in Ohio. Inclusion criteria for the epilepsy group included children with a diagnosis of IGE; the ASD group included diagnosis of epilepsy and ASD. Both groups included children aged 2-18 years. To capture patient QoL, adult caregivers completed the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55), and to capture caregiver QoL, adult caregivers completed the Health-Related Social Needs (HRSN) and the CarerQoL-7D instrument.
RESULTS: A total of 43 caregivers completed the surveys. There was a greater distribution of female patients in the IGE group (57.1%) versus the ASD group which had higher distribution of males (86.4%). Cognitive functioning (M = 33.0), emotional functioning (M = 57.4), physical functioning (M = 33.6) and overall QOLCE-55 mean score (M = 45.2) revealed a statistically significant lower QoL in the ASD group (n = 22), compared to the IGE group (n = 21) (M = 76.8, M = 75.4, M = 61.8, M = 75.3 respectively). The overall CarerQol-7D score mirrored these results with a lower score in the ASD group (M = 68.8) compared to the IGE group (M = 80.3). The individual dimensions in the CarerQol and HRSN revealed no differences.
CONCLUSIONS: The QoL as assessed by caregivers for the patients and the caregivers themselves was lower in the ASD group compared to the IGE group. QoL assessment should be integrated in clinical care for comprehensive health management.
METHODS: We conducted a case-control study from a single pediatric hospital in Ohio. Inclusion criteria for the epilepsy group included children with a diagnosis of IGE; the ASD group included diagnosis of epilepsy and ASD. Both groups included children aged 2-18 years. To capture patient QoL, adult caregivers completed the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55), and to capture caregiver QoL, adult caregivers completed the Health-Related Social Needs (HRSN) and the CarerQoL-7D instrument.
RESULTS: A total of 43 caregivers completed the surveys. There was a greater distribution of female patients in the IGE group (57.1%) versus the ASD group which had higher distribution of males (86.4%). Cognitive functioning (M = 33.0), emotional functioning (M = 57.4), physical functioning (M = 33.6) and overall QOLCE-55 mean score (M = 45.2) revealed a statistically significant lower QoL in the ASD group (n = 22), compared to the IGE group (n = 21) (M = 76.8, M = 75.4, M = 61.8, M = 75.3 respectively). The overall CarerQol-7D score mirrored these results with a lower score in the ASD group (M = 68.8) compared to the IGE group (M = 80.3). The individual dimensions in the CarerQol and HRSN revealed no differences.
CONCLUSIONS: The QoL as assessed by caregivers for the patients and the caregivers themselves was lower in the ASD group compared to the IGE group. QoL assessment should be integrated in clinical care for comprehensive health management.