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Quality of Life Research

, Volume 27, Issue 4, pp 969–977 | Cite as

Health-related quality of life in mothers of children with epilepsy: 10 years after diagnosis

  • Klajdi Puka
  • Mark A. Ferro
  • Kelly K. Anderson
  • Kathy N. Speechley
Article

Abstract

Purpose

Epilepsy in childhood extends far beyond seizures and affects child and parental well-being. The long-term impact of childhood-onset epilepsy on parental well-being is unknown. This study assessed health-related quality of life (HRQOL) in mothers 10 years after their child’s diagnosis of epilepsy.

Methods

Data come from the Health-Related Quality of Life in Children with Epilepsy Study, a multicenter prospective cohort study of children with newly diagnosed epilepsy. Mothers completed a mailed questionnaire at the 10-year follow-up, which included the Short-Form Health Survey (SF-12-v2) to evaluate the physical and mental health components of their HRQOL. Block-wise linear regressions identified child/epilepsy, maternal/family, and maternal psychosocial factors associated with mothers’ HRQOL.

Results

A total of 159 mothers participated in this study (46% of the sample assessed at baseline). At follow-up, 69% of youth had been seizure free for the past 5 years. Mothers scored similarly to population norms (mean: 50, SD: 10) on the mental health subscale (mean: 49.5, SD: 9.3) and significantly better on the physical health subscale (mean: 53.0, SD: 7.6). Better family resources were associated with higher (better) scores on the physical health subscale (B = 0.20; 95% CI 0.03, 0.36). Better family functioning (B = 0.34; 95% CI 0.06, 0.62), fewer maternal depressive symptoms (B = 0.33; 95% CI 0.20, 0.47), and perception of less stress (B = 0.70; 95% CI 0.52, 0.88) were associated with higher (better) scores on the mental health subscale.

Conclusion

Ten years after the diagnosis of epilepsy in children, the HRQOL of mothers was similar to reports from women in the general population. This study identified factors contributing to better maternal HRQOL and highlights the importance of family environment over epilepsy-related variables.

Keywords

Parent Family Long-term outcome Pediatric Childhood onset Psychopathology 

Notes

Acknowledgements

We are grateful to all the youth, parents, physicians, and staff for taking part in our study. The Canadian Pediatric Epilepsy Network facilitated the participation of physicians. This study was funded by two grants from the Canadian Institutes of Health Research (MOP-64311 & MOP-115015) to Dr. Speechley et al. Mr. Puka has been supported by a graduate scholarship from the Canadian Institutes of Health Research and an Ontario Graduate Scholarship. Dr. Ferro holds the Canada Research Chair in Youth Mental Health from the Canadian Institutes for Health Research. Dr. Anderson is supported by a New Investigator Fellowship from the Ontario Mental Health Foundation.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflicts of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Supplementary material

11136_2017_1778_MOESM1_ESM.docx (25 kb)
Supplementary material 1 (DOCX 25 KB)

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Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Klajdi Puka
    • 1
    • 2
  • Mark A. Ferro
    • 3
  • Kelly K. Anderson
    • 1
    • 2
    • 4
  • Kathy N. Speechley
    • 1
    • 2
    • 5
  1. 1.Department of Epidemiology & BiostatisticsWestern UniversityLondonCanada
  2. 2.Children’s Health Research InstituteLawson Health Research InstituteLondonCanada
  3. 3.School of Public Health and Health SystemsUniversity of WaterlooWaterlooCanada
  4. 4.Department of PsychiatryWestern UniversityLondonCanada
  5. 5.Department of Paediatrics, Western UniversityChildren’s Hospital, LHSCLondonCanada

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