Verification of the reliability and validity of a Danish version of the quality of life in childhood epilepsy questionnaire (QOLCE-D).

Multivariate trajectories across multiple domains of health-related quality of life in children with new-onset epilepsy

This study assessed health-related quality of life (HRQoL) reported by overweight adolescents and compared to their parent-proxy perception of HRQoL, according to adolescent gender, adolescent age, and parent gender. Patients and a total of 179 adolescents aged 10 to 18 years with excess weight were evaluated for perceived HRQoL prior to beginning a weight-loss intervention, using the Pediatric Quality of Life Inventory (PedsQL 4.0) questionnaire, estimating quality of life in the physical, emotional, social, and school domains, as well as index measures of psychosocial and overall quality of life. Parents completed the same questionnaire estimating his or her child's HRQoL. Compared to their child's self-report, parents underestimated all the domains of HRQoL except the school domain. Parents underestimated all the domains of HRQoL among boys; however, they only underestimated the physical domain among girls. Comparisons between parent-proxy perception and self-report of the adolescent according to adolescent's age revealed that parents underestimated their children's HRQoL in the younger adolescents (10 to 13 years) for all except for the school domain and underestimated only the physical domain in older adolescents (14 to 18 years). The same comparison between parent-proxy perception and their child's self-report of HRQoL according to parent gender showed that mothers underestimated HRQoL in all domains except for the school domain, while fathers only underestimated the school domain. The differences between self-report of overweight adolescent and perceptions of their parents about the HRQoL of their children are influenced by adolescent gender and age and parent gender.

ObjectiveTo identify and appraise published evidence of the measurement properties for epilepsy‐specific patient‐reported outcome measures (PROMs) of children's health‐related quality of life (HRQoL).MethodsWe searched multiple databases for studies evaluating the measurement properties of English‐language epilepsy‐specific PROMs of children's HRQoL. We assessed the methodological quality using the COnsensus‐based Standards for the selection of health Measurement INstruments (COSMIN) guidance. We extracted data about the content validity, construct validity, internal consistency, test‐retest reliability, proxy reliability, responsiveness, and precision, and assessed the measurement properties with reference to standardized criteria.ResultsWe identified 27 papers that evaluated 11 PROMs. Methodological quality was variable. Construct validity, test‐retest reliability, and internal consistency were more commonly assessed. Quality of Life in Childhood Epilepsy (QoLCE) questionnaires are parent‐reported and evaluated more than other PROMs; QoLCE‐55 has good and replicated evidence for structural and construct validity and internal consistency. Health‐Related Quality of Life Measure for Children with Epilepsy (CHEQoL) has both child and parent‐reported versions and good evidence of content, structural, and construct validity.SignificanceThis review identified two leading candidate epilepsy‐specific PROMs for measuring health‐related quality of life in children. Establishing evidence of the responsiveness of PROMs is a priority to help the interpretation of meaningful change scores.

Parental coping and its role in predicting health-related quality of life in pediatric epilepsy

To determine whether epilepsy surgery improved health-related quality of life (HRQoL) and whether seizure freedom after surgery mediated the improvement in HRQoL. This multicenter cohort study compared HRQoL after epilepsy surgery to pharmacological management in children with drug-resistant epilepsy (DRE). HRQoL was measured using the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire at baseline and 1-year follow-up. The mediator between treatment type and HRQoL was seizure freedom. Two hundred and thirty-seven patients were recruited (surgery group: n=147 [92 males, 45 females]; pharmacological group: n=90 [53 males, 37 females]). Mean age at seizure onset was 6 years (SD 4y 4mo) in the surgical group and 6 years 1 month (SD 4y) in the pharmacological group. The odds ratio of seizure freedom was higher for the surgery versus pharmacological group (β=4.24 [95% confidence interval {CI}: 2.26-7.93], p<0.001). Surgery had no direct effect on total QOLCE score at 1-year (β=0.24 [95% CI -2.04 to 2.51], p=0.839) compared to pharmacological management, but had an indirect effect on total QOLCE that was mediated by seizure freedom (β=0.92 [95% CI 0.19-1.65], p=0.013), adjusting for baseline total QOLCE score. Surgery had a direct effect on improving social function (p=0.043), and an indirect effect on improving physical function (p=0.016), cognition (p=0.042), social function (p=0.012) and behavior (p=0.032), mediated by seizure freedom. Greater seizure freedom achieved through epilepsy surgery mediated the improvement in HRQoL compared to pharmacological management in children with DRE. Seizure freedom is higher after pediatric epilepsy surgery compared to pharmacologically managed epilepsy. Surgery indirectly improves health-related quality of life (HRQoL) mediated by seizure freedom compared to pharmacological management. Surgery has a direct effect on improving social function relative to pharmacological management. Baseline HRQoL was an important predictor of HRQoL after treatment.

The objective of this study was to examine the association between convulsive status epilepticus (CSE) and health-related quality of life (HRQL) during a 24-month follow-up in a multisite incident cohort of children with epilepsy. Data were collected in the Health-Related Quality of Life Study in Children with Epilepsy Study from 374 families of children with newly diagnosed epilepsy. The Quality of Life in Childhood Epilepsy (QOLCE) Questionnaire was used to evaluate parent-reported child HRQL. Hierarchical linear regression was used to examine the relationship between CSE and HRQL at 24 months postepilepsy. A total of 359 families completed the 24-month assessment. Twenty-two children (6.1%) had experienced CSE during the follow-up. Children with and without CSE were similar, except a larger proportion of children with CSE had partial seizures (p < 0.001). Controlling for clinical, demographic, and family characteristics, CSE was significantly associated with poorer HRQL (β = -4.65, p = 0.031). The final model explained 47% of the variance in QOLCE scores. The findings suggested that not only do children with CSE have significantly poorer HRQL compared with their non-CSE counterparts, but that this factor is independent of the effects of demographic and clinical features known to affect HRQL.

The effects of epilepsy may disturb the ability of the child and family to function and has detrimental effects on health-related quality of life (HRQOL). We determined HRQOL and related factors in children and adolescents with epilepsy in Iran. This cross-sectional study was performed in a private neurology pediatric clinic in Guilan Province (North of Iran). We evaluated 108 children and adolescents with epilepsy. Data were collected by interview with parents and review of medical records. Generic and specific HRQOL was evaluated by Child Health Questionnaire and QOL in Childhood Epilepsy Questionnaire, respectively. The mean of overall generic HRQOL score was 71.05 ± 11.31. The lowest score was related to parental impact: emotional (52.59 ± 15.49). The average total specific HRQOL score was 71.95 ± 11.16. The lowest score dedicated to general health (51.21 ± 18.25). In multivariate regression analysis, duration of epilepsy (p < .016) was independently associated with generic HRQOL scores. Variables were independently associated with specific HRQOL scores including gender (p < .003), duration of epilepsy (p < .011), and family history of epilepsy (p < .005). We found that epilepsy duration was the strongest predictor of both generic and specific HRQOL in children and adolescents with epilepsy. This will be useful for clinicians in epilepsy management, which will enhance HRQOL.

Pediatric drug-resistant epilepsy (DRE) is associated with poor health-related quality of life (HRQOL). Achieving seizure control, however, does not improve HRQOL in all children. This study sought to evaluate whether (1) baseline caregiver and family factors are associated with child HRQOL at 1-year follow-up over and above epilepsy characteristics, treatment, and seizure outcome; and (2) baseline family factors moderate the association between seizure outcome and child HRQOL at 1-year follow-up. This multicenter longitudinal cohort study recruited 152 children with DRE who were being evaluated for surgical candidacy. Child HRQOL was rated by caregivers using the Quality of Life in Childhood Epilepsy Questionnaire at baseline and 1-year follow-up. Additional data collected at baseline included child epilepsy characteristics, caregiver demographics, caregiver mood, and family environment. Seizure freedom was achieved in 68% and 28% of patients 1 year after surgery and medical treatment, respectively. Caregiver and family factors were not associated with higher child HRQOL at follow-up after accounting for epilepsy characteristics, treatment, seizure outcome, and baseline child HRQOL, F11, 131 =1.34, P=.21, ΔR2 =.04. Family resources moderated the association between seizure outcome and child HRQOL at follow-up (b=.41, 95% confidence interval [CI] = 0.09-0.74, P=.03); seizure freedom was strongly associated with higher HRQOL when family resources were high (b=13.50, 95% CI = 8.35-18.54, P<.001), relative to when family resources were low (b=5.17, 95% CI = -0.18 to 10.52, P=.06). Family relationships and demands did not moderate the relationship between seizure outcome and HRQOL. Achieving seizure freedom was associated with better HRQOL in children with DRE, but this association was reduced for those children who presented with limited family resources. These results highlight the importance of assessing the family environment during presurgical evaluation and implementing early family-based intervention and supports to promote better outcomes for children in the long term.

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. 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. Children had a mean age of 11.85 ± 3.81 years and 65 (56.5%) were male. The mean composite QOLCE score was 60.18 ± 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 (β = 0.20, p = 0.004), fewer family resources (β = 0.43, p = 0.012), and caregiver unemployment (β = 6.53, p = 0.018) were associated with diminished HRQL in children. 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.

Health-related quality of life before and after pediatric epilepsy surgery: The influence of seizure outcome on changes in physical functioning and social functioning

Executive function and health-related quality of life in pediatric epilepsy.

To develop and validate a shortened version of the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE). A secondary aim was to compare baseline risk factors predicting health-related quality of life (HRQoL) in children newly diagnosed with epilepsy, as identified using the original and shortened version. Data came from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES, N = 373), a multicenter prospective cohort study. Principal component analysis reduced the number of items from the original QOLCE, and factor analysis was used to assess the factor structure of the shortened version. Convergent and divergent validity was assessed by correlating the Child Health Questionnaire (CHQ) with the shortened QOLCE. Multiple regression identified risk factors at diagnosis for HRQoL at 24 months. A four-factor, higher-order, 55-item solution was obtained. A total of 21 items were removed. The final model represents functioning in four dimensions of HRQoL: Cognitive, Emotional, Social, and Physical. The shortened QOLCE demonstrated acceptable fit: Bentler's Comparative Fit Index = 0.944; Tucker-Lewis Index = 0.942; root mean square approximation = 0.058 (90% CI: 0.056-0.061); weighted root mean square residuals (WRMR) = 1.582, and excellent internal consistency (α = 0.96, subscales α > 0.80). Factor loadings were good (first-order: λ = 0.66-0.93; higher-order λ = 0.66-0.85; p < 0.001 for all). The shortened QOLCE scores correlated strongly with similar subscales of the Child Health Questionnaire (ρ = 0.38-0.70) while correlating weakly with dissimilar subscales (ρ = 0.30-0.31). While controlling for HRQoL at diagnosis, predictors for better HRQoL at 24 months were the following: no cognitive problems reported (p = 0.001), better family functioning (p = 0.014), fewer family demands (p = 0.008), with an interaction between baseline HRQoL and cognitive problems (p = 0.011). Results offer initial evidence regarding reliability and validity of the proposed 55-item shortened version of the QOLCE (QOLCE-55). The QOLCE-55 produced results on risk factors consistent with those found using the original measure. Given the fewer items, QOLCE-55 may be a viable option reducing respondent burden when assessing HRQoL in children with epilepsy.

Quality of Life in Children with Acute Immune Thrombocytopenia Is Related to the Course of the Disease and Not to Treatment Modality or Bleeding Tendency

Advancements in treatment have improved the prognosis of children with acute lymphoblastic leukemia (ALL). Therefore, there is a need to explore health-related quality of life (HRQOL) in depth, specifically in maintenance therapy, where the available data are minimal. This study was conducted to assess the varied items listed in the domains of HRQOL of Children with ALL during maintenance therapy from a parent's perspective. Forty children on the maintenance therapy of ALL, 40 siblings, and 40 healthy children were enrolled, and the HRQOL was assessed by parent proxy reports and child self-reports using PedsQL generic core 4.0 in local language. Parents significantly overrated the HRQOL of ALL patients, their siblings, and healthy children in comparison with child self-report in all domains of health. The HRQOL of children with ALL on maintenance therapy was significantly poorer than siblings and healthy children, but their ability to self-care, household work, attentiveness, and ability to do homework were not affected as per parents' reports. Parents reported that absenteeism because of sickness and hospital visits was more among children with ALL than siblings and healthy children. Children with ALL had emotional problems such as fear, anger, sleeping problems, and worries. In a social health domain, parents reported difficulty in competing among children with ALL. The HRQOL of siblings was as good as healthy children in physical, social, and school health domains as per parents' reports. In our cohort, parents overrated HRQOL in all groups of children. The study identified the various items in each domain of HRQOL that were affected in children with ALL from parents' perspective; this would guide health care professionals to focus on these specific items so as to improve the overall HRQOL of children with ALL.

ObjectiveTo estimate anti-seizure medication (ASM) treatment burden and its effects on health-related quality of life (HRQOL) in new-onset childhood epilepsy with centrotemporal spikes (CECTS) using different treatment approaches in Kazakhstan.MethodsForty-three patients were followed prospectively during 2015 to 2020 for at least 2 years. Patients were divided into three groups: (1) history of ≤3 seizures (n = 32); (2) ≥4 seizures (n = 6); (3) cerebral palsy coexisting with CECTS (n = 5). The first group was subdivided into treated (n = 8) and observed (n = 24) subgroups. The shortened Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) was completed by parents after 6 months of follow-up.ResultsAt the end of the study, all children had a sustained remission from seizures for at least 2 years. Differences were identified in emotional, social, and physical subscales between patients in the low seizure frequency group. Signs of low self-esteem, anxiety, depression, limited social interaction owing to pharmacotherapy, painful medical procedures, and stigma were reasons for decreased HRQOL in the treated subgroup. Overall HRQOL in treated (89.2 ± 5.2) patients was significantly decreased compared with observed children with low seizure frequency (98.0 ± 3.0).ConclusionASM therapy does not necessarily improve and may decrease HRQOL in children with low seizure frequency CECTS.