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Care-related quality of life in caregivers of children with drug-resistant epilepsy.

Abstract：

BACKGROUND:Epilepsy in children negatively impacts on caregiver quality of life (QOL). The study aimed to evaluate the relationships between patient factors [demographics, clinical factors, health-related quality of life (HRQL)], contextual factors (socio-economic factors), caregiver mood, and caregiver QOL, and whether family factors mediate the relationship between patient HRQL and caregiver QOL. METHODS:Children aged 4-18 years with medically intractable epilepsy were enrolled. Patient demographics, clinical data, patient HRQL [measured using Quality of Life in Childhood Epilepsy Questionnaire (QOLCE)], socio-economic factors, caregiver anxiety and depression, and family factors (adaptation, resources and demands) were assessed. Caregiver QOL was measured using CarerQol, which evaluates care-related QOL, incorporating the negative and positive effects of caregiving. RESULTS:One hundred and eighty-one children were studied. In bivariable regression analysis, higher patient HRQL (QOLCE) (β = 0.54, p < 0.001) and household income (β = 10.49, p = 0.019) were associated with higher caregiver QOL. Higher depression (β = - 2.48, p < 0.001) and anxiety (β = - 2.04, p < 0.001) were associated with lower caregiver QOL. Seizure severity and other socio-economic factors did not influence caregiver QOL (all p > 0.05). In multivariable regression analysis, higher QOLCE (β = 0.21, p = 0.001), lower depression (β = - 1.07, p < 0.001) and lower anxiety (β = - 1.19, p < 0.001) were associated with higher caregiver QOL. Family demands and resources moderated the relationship between patient HRQL and caregiver QOL. CONCLUSIONS:Patient HRQL and caregiver mood were more important correlates of caregiver QOL than seizure severity in medically intractable epilepsy. The findings are significant in delineating variables (caregiver mood and family factors) that are potentially modifiable, and show promise for improving caregiver QOL.

journal_name

J Neurol

journal_title

Journal of neurology

authors

Jain P,Subendran J,Smith ML,Widjaja E,PEPSQOL Study Team.

doi

10.1007/s00415-018-8979-4

subject

Has Abstract

pub_date

2018-10-01 00:00:00

pages

2221-2230

issue

eissn

0340-5354

issn

1432-1459

pii

10.1007/s00415-018-8979-4

journal_volume

265

pub_type

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Care-related quality of life in caregivers of children with drug-resistant epilepsy.