Health-related quality of life and the burden of prolonged seizures in noninstitutionalized children with epilepsy

Abstract

This study aimed to provide information on the burden of illness and health-related quality of life (HRQoL) in children with epilepsy who experience prolonged acute convulsive seizures (PACS) in the community setting, and to investigate factors that may predict poor HRQoL in this population. Methods: Noninstitutionalized children (aged 3-16 years) who had experienced at least one PACS within the past year and had currently prescribed PACS rescue medication were enrolled in a cross-sectional study in Germany, Italy, Spain, and the United Kingdom (Practices in Emergency and Rescue medication For Epilepsy managed with Community-administered Therapy 3 [PERFECT-3]). Clinicians, parents/guardians, and patients completed webbased questionnaires regarding clinical characteristics, PACS frequency, and day-today impairment. Patients' HRQoL was rated by clinicians, parents/guardians, and patients themselves using the 5-dimension EuroQol questionnaire (EQ-5D) and summarized as a utility score. Potential predictors of poor HRQoL were tested in individual univariate generalized linear models and a global multivariable model. Results: Enrolled children (N = 286) had experienced 1-400 PACS (median: 4) in the past year. Clinicians reported that 216/281 patients (76.9%) had learning disabilities of varying severity. Mean EQ-5D utility scores rated by clinicians (n = 279), parents (n = 277), and patients (n = 85) were 0.52 (standard deviation: 0.41), 0.51 (0.39), and 0.74 (0.29), respectively. Increasing PACS frequency, increasing severity of learning disability, and specialist school attendance were significantly associated with decreasing EQ-5D utility score. In the multivariable model, having learning disabilities was the best predictor of poor HRQoL. Significance: Health-related quality of life was very poor in many children with epilepsy whose PACS were managed with rescue medication in the community, with learning disability being the most powerful predictor of patients' HRQoL. Mean EQ-5D utility scores were lower (worse) than published values for many other chronic disorders, indicating that optimal treatment should involve helping children and their families to manage learning disabilities and day-today impairments, in addition to preventing seizures.

Raising the bar: Fenfluramine sets new treatment standards for Dravet syndrome

“…Improving the interval between seizures improves quality of life not only for the patient but also for the entire family unit, including parents and siblings [22][23][24]. Further, reducing the frequency of prolonged acute convulsive seizures has the potential to improve quality of life by preventing episodes of status epilepticus and associated long-term, irreversible neurological sequelae [25].…”

Comparative assessment of health-related quality of life with and without anticonvulsant therapy in patients with childhood epilepsy with centrotemporal spikes

“…This instrument can serve as a measurable proxy to improve the clinical pathway in CECTS. At present, this is likely the optimal method to estimate the overall burden of epilepsy 30,31 and ASM therapy on patients and their family.…”

Parent/caregiver reported health-related functioning in Chinese children with epilepsy: A cross-sectional, parents-responded, hospital-based study

“…Cross-sectional studies on the Indian, [ 10 , 11 ] the Nigerian, [ 12 ] and the European [ 13 ] CWEs reported that epilepsy significantly affected the QoL in children. There are very limited studies conducted on these aspects from the Jiangsu region of China that have shown more focus on this issue.…”

“…[8] Health-related quality of life (HRQoL) is a multidimensional concept that includes emotional, mental, physical, behavioral, and social aspects of the well-being and functioning of the patients. [9] Cross-sectional studies on the Indian, [10,11] the Nigerian, [12] and the European [13] CWEs reported that epilepsy significantly affected the QoL in children. There are very limited studies conducted on these aspects from the Jiangsu region of China that have shown more focus on this issue.…”