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

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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.

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Acknowledgements

PEPSQOL Study Team: O. Carter Snead and Cristina Go (Hospital for Sick Children, Toronto), Mary Connolly (BC Children’s Hospital, Vancouver), Rajesh Ramachandrannair (McMaster Children’s Hospital, Hamilton), Lionel Carmant (Ste. Justine Children’s Hospital, Montreal), Kathy Speechley (Western University, London), Andrea Andrade (Children’s Hospital at London Health Sciences Centre, London), Mark Ferro (University of Waterloo, Waterloo), Luis Bello-Espinosa (Alberta Children’s Hospital, Calgary), Qi Xu and Edward Leung (The Children’s Hospital, Winnipeg), Salah Almubarak (Royal University Hospital, Saskatoon), and Paula Brna (IWK Health Center, Halifax).

Funding

PEPSQOL (Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life) was funded by a Grant from the Canadian Institutes for Health Research (MOP-133708) to Dr. E Widjaja and Dr. ML Smith.

Author information

Authors and Affiliations

  1. Comprehensive Epilepsy Center, Division of Neurology, Hospital for Sick Children, Toronto, Canada

    Puneet Jain & Elysa Widjaja

  2. Neuroscience and Mental Health, Hospital for Sick Children, Toronto, Canada

    Jhananiee Subendran, Mary Lou Smith & Elysa Widjaja

  3. Department of Psychology, University of Toronto, Toronto, Canada

    Mary Lou Smith

  4. Department of Diagnostic Imaging, Hospital for Sick Children, Toronto, ON, M5G 1X8, Canada

    Elysa Widjaja

Authors
  1. Puneet Jain
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  2. Jhananiee Subendran
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  3. Mary Lou Smith
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  4. Elysa Widjaja
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Consortia

The PEPSQOL Study Team

  • O. Carter Snead
  • , Cristina Go
  • , Mary Connolly
  • , Rajesh Ramachandrannair
  • , Lionel Carmant
  • , Kathy Speechley
  • , Andrea Andrade
  • , Mark Ferro
  • , Luis Bello-Espinosa
  • , Qi Xu
  • , Edward Leung
  • , Salah Almubarak
  •  & Paula Brna

Corresponding author

Correspondence to Elysa Widjaja.

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The authors declare no competing financial interest.

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Additional information

The members of the PEPSQOL Study Team are listed in Acknowledgements.

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Jain, P., Subendran, J., Smith, M.L. et al. Care-related quality of life in caregivers of children with drug-resistant epilepsy. J Neurol 265, 2221–2230 (2018). https://doi.org/10.1007/s00415-018-8979-4

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  • DOI: https://doi.org/10.1007/s00415-018-8979-4

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