Health-related quality of life in mothers of children with epilepsy: 10 years after diagnosis
- 315 Downloads
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.
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.
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.
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.
KeywordsParent Family Long-term outcome Pediatric Childhood onset Psychopathology
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.
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 was obtained from all individual participants included in the study.
- 2.Sillanpaa, M., Besag, F., Aldenkamp, A., Caplan, R., Dunn, D. W., & Gobbi, G. (2016). Psychiatric and behavioural disorders in children with epilepsy (ILAE Task Force Report): Epidemiology of psychiatric/behavioural disorder in children with epilepsy. Epileptic Disorders, 18(Suppl. 1), S2–S7.Google Scholar
- 3.Dunn, D. W., Besag, F., Caplan, R., Aldenkamp, A., Gobbi, G., & Sillanpaa, M. (2016). Psychiatric and behavioural disorders in children with epilepsy (ILAE Task Force Report): Anxiety, depression and childhood epilepsy. Epileptic Disorders, 18(suppl. 1), S24–S30.Google Scholar
- 19.Ware, J. E., Kosinski, M., Turner-Bowker, D. M., & Gandek, B. (2002). User’s manual for the SF-12v2® health survey (with a supplement documenting SF-12® health survey). Lincoln, RI: QualityMetric Incorporated.Google Scholar
- 22.McCubbin, H. I., Thompson, A. I., & McCubbin, M. A. (Eds.). (1996). FIRM: Family inventory of resources for management. In Family assessment: Resiliency, coping and adaptation. Inventories for research and practice. Madison, WI: University of Wisconsin Publishers.Google Scholar
- 23.McCubbin, H. I., Thompson, A. I., & McCubbin, M. A. (Eds.). (1996). FILE: Family inventory of life events and changes. In Family assessment: Resiliency, coping and adaptation. Inventories for research and practice. Madison, WI: University of Wisconsin Publishers.Google Scholar
- 26.Cohen, S., & Williamson, G. (1988). Perceived stress in a probability sample of the United States. In S. Spacapan & S. Oskamp (Eds.), The social psychology of health. Newbury Park, CA: Sage.Google Scholar
- 39.Reinke, J. S., & Solheim, C. A. (2014). Families of children with Autism Spectrum Disorder: The role of family-centered care in perceived family challenges. Family relationships and familial responses to health issues.Google Scholar
- 40.de Graaf, R., Bijl, R. V., Smit, F., Ravelli, A., & Vollebergh, W. A. (2000). Psychiatric and sociodemographic predictors of attrition in a longitudinal study: The Netherlands Mental Health Survey and Incidence Study (NEMESIS). American Journal of Epidemiology, 152, 1039–1047.CrossRefPubMedGoogle Scholar