Quality of life in children with new-onset epilepsy

Speechley, Kathy N.; Ferro, Mark A.; Camfield, Carol; Huang, Wen‐Yi; Levin, Simon; Smith, Mary Lou; Wiebe, Samuel; Zou, Guangyong

doi:10.1212/wnl.0b013e31826e25aa

Cited by 100 publications

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“…19 A few studies have documented associations between family factors and HRQL in children with newonset epilepsy 11,17,20,21 as well as a mixed sample of children with active and medication-managed epilepsy.…”

Section: Full-length Original Researchmentioning

confidence: 99%

“…Sociodemographic information including child age, sex, caregiver education, caregiver age, caregiver work status, and socioeconomic status (income) were obtained through a parent questionnaire. 11,20 Finally, the intelligence quotient (IQ) of all patients was assessed using the Wechsler Abbreviated Scale of Intelligence-II (for ages 6-18 years) 33 or the Wechsler Preschool and Primary Scale of Intelligence-IV (for ages 4-5 years). 34 The study protocol received approval from the ethics boards of all participating hospitals and consent was obtained from each participant.…”

Section: Participantsmentioning

confidence: 99%

“…Depression and anxiety are present in up to 56% of parents of children with epilepsy 15,16 and have been shown to correlate with children's HRQL. 12,13,15,17 Families of children with epilepsy experience significantly more stress, anxiety, and restrictions in family life, 18 higher levels of dissatisfaction with their social situation, 16 poorer parent-child relationships, 19 and more problems with family functioning and adaptation.19 A few studies have documented associations between family factors and HRQL in children with newonset epilepsy 11,17,20,21 as well as a mixed sample of children with active and medication-managed epilepsy.14 At the more severe end of the spectrum, drug-resistant epilepsy is defined as failure to achieve sustained seizure freedom with adequate trials of two or more tolerated and appropriately chosen antiseizure medications. 22 It is unknown if family factors will also influence HRQL in children with drug resistant epilepsy, or whether medical factors including the severity of seizures and number of antiseizure medications may have a dominant effect on HRQL in these children.…”

mentioning

confidence: 99%

“…[3][4][5][6][7][8][9][10] In light of these findings, a predominant objective of the management of pediatric epilepsy is to both improve and prevent potential declines in patient HRQL. 11 Correspondingly, a comprehensive understanding of the factors that may predict and explain variations in children's HRQL warrants rigorous investigation, given the potential implications for both prognosis and intervention. A recent meta-analysis identified several clinical and psychosocial risk factors associated with HRQL, including duration of epilepsy, seizure type, frequency, and severity, number and side effects of anti-seizure medications, presence of a comorbidity, parental anxiety, and family socioeconomic status.…”

mentioning

confidence: 99%

“…12,13,15,17 Families of children with epilepsy experience significantly more stress, anxiety, and restrictions in family life, 18 higher levels of dissatisfaction with their social situation, 16 poorer parent-child relationships, 19 and more problems with family functioning and adaptation. 19 A few studies have documented associations between family factors and HRQL in children with newonset epilepsy 11,17,20,21 as well as a mixed sample of children with active and medication-managed epilepsy.…”

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confidence: 99%

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Correlates of health‐related quality of life in children with drug resistant epilepsy

et al. 2016

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SUMMARYObjective: Health-related quality of life (HRQL) is compromised in children with epilepsy. The current study aimed to identify correlates of HRQL in children with drug resistant epilepsy. Methods: Data came from 115 children enrolled in the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PEPSQOL), a multicenter prospective cohort study. Individual, clinical, and family factors were evaluated. HRQL was measured using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE), a parent-rated epilepsy-specific instrument, with composite scores ranging from 0 to 100. A series of univariable linear regression analyses were conducted to identify significant associations with HRQL, followed by a multivariable regression analysis. Results: Children had a mean age of 11.85 AE 3.81 years and 65 (56.5%) were male. The mean composite QOLCE score was 60.18 AE 16.69. Child age, sex, age at seizure onset, duration of epilepsy, caregiver age, caregiver education, and income were not significantly associated with HRQL. Univariable regression analyses revealed that a higher number of anti-seizure medications (p = 0.020), lower IQ (p = 0.002), greater seizure frequency (p = 0.048), caregiver unemployment (p = 0.010), higher caregiver depressive and anxiety symptoms (p < 0.001 for both), poorer family adaptation, fewer family resources, and a greater number of family demands (p < 0.001 for all) were associated with lower HRQL. Multivariable regression analysis showed that lower child IQ (b = 0.20, p = 0.004), fewer family resources (b = 0.43, p = 0.012), and caregiver unemployment (b = 6.53, p = 0.018) were associated with diminished HRQL in children. Significance: The results emphasize the importance of child cognition and family variables in the HRQL of children with drug-resistant epilepsy. The findings speak to the importance of offering comprehensive care to children and their families to address the nonmedical features that impact on HRQL. KEY WORDS: Pediatric epilepsy, Health-related quality of life, Family.Epilepsy in children can often have catastrophic consequences on multiple domains of health-related quality of life (HRQL). HRQL is defined by the World Health Organization (WHO) as a broad, multidimensional construct including not only the disease state but also the person's physical, psychological, and social well-being. This term refers to the impact, both subjective and objective, of dysfunction associated with illness or injury, and treatment. FULL-LENGTH ORIGINAL RESEARCHsubstantial body of literature suggests that HRQL is impaired in children with epilepsy, 2 who have higher rates of behavioral, cognitive, emotional, social, and academic problems compared to healthy children or children with other chronic health conditions. [3][4][5][6][7][8][9][10] In light of these findings, a predominant objective of the management of pediatric epilepsy is to both improve and prevent potential declines in patient HRQL.11 Correspondingly, a comprehensive understanding of the factors that...

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Section: Full-length Original Researchmentioning

confidence: 99%

Section: Participantsmentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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confidence: 99%

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Correlates of health‐related quality of life in children with drug resistant epilepsy

et al. 2016

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Trajectory of Health-Related Quality of Life After Pediatric Epilepsy Surgery

et al. 2023

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ImportanceHealth-related quality of life (HRQOL) is regarded as a key outcome for evaluating treatment efficacy. However, it is uncertain how HRQOL evolves after epilepsy surgery compared with medical therapy, such as whether it continues to improve over time, improves and then remains stable, or deteriorates after a period of time.ObjectiveTo assess trajectory of HRQOL over 2 years in children with drug-resistant epilepsy (DRE) treated with surgery compared with medical therapy.Design, Setting, and ParticipantsProspective cohort study assessing HRQOL longitudinally over 2 years. Participants were children recruited from 8 epilepsy centers in Canada from 2014 to 2019 with suspected DRE aged 4 to 18 years who were evaluated for surgery. Data were analyzed from May 2014 to December 2021.ExposuresEpilepsy surgery or medical therapy.Main Outcomes and MeasuresHRQOL was measured using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE)-55. HRQOL and seizure frequency were assessed at baseline, 6-month, 1-year, and 2-year follow-ups. Clinical, parent, and family characteristics were assessed at baseline. A linear mixed model was used to evaluate HRQOL over time, adjusting for baseline clinical, parent, and family characteristics.ResultsThere were 111 surgical and 154 medical patients (mean [SD] age at baseline was 11.0 [4.1] years; 118 [45%] were female). At baseline, HRQOL was similar among surgical and medical patients. HRQOL of surgical patients was 3.0 (95% CI, −0.7 to 6.8) points higher at 6-month, 4.9 (95% CI, 0.7 to 9.1) points higher at 1-year, and 5.1 (95% CI, 0.7 to 9.5) points higher at 2-year follow-ups compared with medical patients. Surgical patients experienced greater improvements in social functioning relative to medical patients, but not for cognitive, emotional, and physical functioning. At 2-year follow-up, 72% of surgical patients were seizure-free, compared with 33% of medical patients. Seizure-free patients reported higher HRQOL than those who were not.Conclusions and RelevanceThis study provided evidence on the association between epilepsy surgery and children’s HRQOL, with improvement in HRQOL occurring within the first year and remaining stable 2 years after surgery. By demonstrating that surgery improved seizure freedom and HRQOL, which has downstream effects such as better educational attainment, reduced health care resource utilization, and health care cost, these findings suggest that the high costs of surgery are justified, and that improved access to epilepsy surgery is necessary.

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