Health-related quality of life in childhood epilepsy: Moving beyond 'seizure control with minimal adverse effects'

Health and Quality of Life Outcomes

Peter Rosenbaum²  David L Streiner¹  Gabriel M Ronen² 

[1] Kunin-Lunenfeld Applied Research Unit, Department of Psychiatry, University of Toronto., 734-3560 Bathurst Street, Toronto, Ontario, Canada, M6A 2E1;Department of Pediatrics, McMaster University, 1200 Main Street West, Hamilton, Ontario, Canada, L8N 3Z5

关键词: goals of care;    proxy;    parents;    self-report measure;    epilepsy;    children;    measures;    outcome;    health-related quality of life;    review;   

Others  :  1217120
DOI  :  10.1186/1477-7525-1-36

 received in 2003-07-15, accepted in 2003-08-28,  发布年份 2003

【 摘 要 】

Childhood epilepsy is one of the most important and prevalent neurological conditions in the developing years. Persons with childhood onset epilepsy are at a high risk for poor psychosocial outcomes, even without experiencing co-morbidities. The goal of management of children with epilepsy should be to enable the child and the family to lead a life as free as possible from the medical and psychosocial complications of epilepsy. This comprehensive care needs to go beyond simply trying to control seizures with minimal adverse drug reactions. Seizure frequency and severity is only one important outcome variable. Other factors such as social, psychological, behavioural, educational, and cultural dimensions of their lives affect children with epilepsy, their families and their close social networks.

A number of epilepsy-specific health-related quality of life (HRQL) scales for children have been developed with the aim to include and measure accurately the impact and burden of epilepsy. Their target populations, details of the origin of the items, and psychometric properties vary significantly. Their strengths and weaknesses will be identified more clearly through their continued use in the clinical setting and in research studies. Only a few studies to date have utilized these or generic HRQL measures to assess the HRQL of specific populations with epilepsy.

Future research needs to develop theory driven models of HRQL and identify measurable factors that have important correlations with outcomes. Since biomedical variables like seizure frequency and severity have only moderate correlations with HRQL, other independent factors including the child's resilience, co-morbid conditions, parental well-being, family factors and societal/cultural variables may play a major role. We also need to learn what encompasses comprehensive patient care, define the goals of management and evaluate the impact of different interventions. Future studies need to include the children's own perspectives of their HRQL in addition to parental reports.

Finally, clinicians need to familiarize themselves with outcome measures, be able to evaluate them, and use them routinely in their day-to-day practice.

【 授权许可】

   
2003 Ronen et al; licensee BioMed Central Ltd. This is an Open Access article: verbatim copying and redistribution of this article are permitted in all media for any purpose, provided this notice is preserved along with the article's original URL.

【 图 表 】

Figure 1.

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