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A 2-year prospective cohort study
Kathy N. Speechley, PhD Mark A. Ferro, PhD Carol S. Camfield, MD Wenyi Huang, MSc Simon D. Levin, MD Mary Lou Smith, PhD Samuel Wiebe, MD Guangyong Zou, PhD
Objectives: To assess health-related quality of life (HRQL) over 2 years in children 4Ϫ12 years old with new-onset epilepsy and risk factors. Methods: Data are from a multicenter prospective cohort study, the Health-Related Quality of Life Study in Children with Epilepsy Study (HERQULES). Parents reported on children’s HRQL and family factors and neurologists on clinical characteristics 4 times. Mean subscale and summary scores were computed for HRQL. Individual growth curve models identified trajectories of change in HRQL scores. Multiple regression identified baseline risk factors for HRQL 2 years later. Results: A total of 374 (82%) questionnaires were returned postdiagnosis and 283 (62%) of
eligible parents completed all 4. Growth rates for HRQL summary scores were most rapid during the first 6 months and then stabilized. About one-half experienced clinically meaningful improvements in HRQL, one-third maintained their same level, and one-fifth declined. Compared with the general population, at 2 years our sample scored significantly lower on one-third of CHQ subscales and the psychosocial summary. After controlling for baseline HRQL, cognitive problems, poor family functioning, and high family demands were risk factors for poor HRQL 2 years later.
Correspondence & reprint requests to Dr. Speechley: email@example.com
Conclusions: On average, HRQL was relatively good but with highly variable individual trajectories. At least one-half did not experience clinically meaningful improvements or declined over 2 years. Cognitive problems were the strongest risk factor for compromised HRQL 2 years after diagnosis and may be largely responsible for declines in the HRQL of children newly diagnosed with epilepsy. Neurology® 2012;79:1548–1555
AED ϭ antiepileptic drug; ANOVA ϭ analysis of variance; CES-D ϭ Center for Epidemiologic Studies Depression Scale; CHQ ϭ Child Health QuestionnaireϪParent Form; CWE ϭ children with epilepsy; Family APGAR ϭ Family Adaptability, Partnership, Growth, Affection, and Resolve; FILE ϭ Family Inventory of Life Events and Changes; FIRM ϭ Family Inventory of Resources for Management; GASE ϭ Global Assessment of Severity of Epilepsy; HERQULES ϭ Health-Related Quality of Life Study in Children with Epilepsy Study; HRQL ϭ health-related quality of life; QOLCE ϭ Quality of Life in Children with Epilepsy Questionnaire; SEM ϭ standard error of measurement.
Supplemental data at www.neurology.org
The primary goal in managing epilepsy is to optimize patients’ health-related quality of life (HRQL) by affording them a lifestyle as free as possible from the medical and psychosocial sequelae of seizures.1,2 Empirical evidence of the natural course of HRQL and associated risk factors is an essential step toward providing prognostic information to patients and families and determining key factors along the causal pathway that may be amenable to interventions to mute the potential negative effects of epilepsy on HRQL. Most empirical assessments of HRQL in children with epilepsy (CWE) have focused on a specific aspect of HRQL (e.g., psychological well-being, social competence, or behavior). Of the comprehensive, multidimensional assessments of HRQL in children, most had small samples and focused on selected subgroups such as adolescents,3,4 children with intractable/refractory epilepsy,5,6 or children
From the Departments of Paediatrics (K.N.S., S.D.L.) and Epidemiology and Biostatistics (K.N.S., W.H., G.Y.Z.) and Robarts Research Institute (G.Y.Z.), Western University, London; Children’s Health Research Institute (K.N.S., W.H., S.D.L.), Lawson Health Research Institute, London; Department of Psychiatry and Behavioural Neurosciences (M.A.F.) and Offord Centre for Child Studies (M.A.F.), McMaster University, Hamilton; Child Neurology, IWK Health Centre, Department of Paediatrics (C.S.C.), Dalhousie University, Halifax; Department of Psychology (M.L.S.), University of Toronto, Toronto; and Department of Clinical Neuroscience (S.W.), University of Calgary, Calgary, Canada. Study funding: Supported by Canadian Institutes of Health Research (MOP-64311 to K.N.S. [Principal Investigator], C.S.C., S.D.L., M.L.S., S.W., and G.Y.Z.). Go to Neurology.org for full disclosures. Disclosures deemed relevant by the authors, if any, are provided at the end of this article. Copyright © 2012 by AAN Enterprises, Inc.
and a generic measure. parents’ marital status. Given no well-established minimal clinically important differences for the HRQL measures.0014) and higher income ( p ϭ 0.0002). Growth. convergent. Standard protocol approvals. Data were collected in the Health-Related Quality of Life Study in Children with Epilepsy Study (HERQULES). Additional details are available (see appendix e-1 on the Neurology® Web site at www. Neurologists reported on types of seizures and of epilepsy syndrome. and construct validity and high intra. frequency of seizures.16 guided the categorization of neurologists’ reports of epilepsy/epilepsy syndrome types. were used. CHQPhysical. Pearson correlations assessed associations between continuous baseline variables and HRQL at 2 years.7. Statistical analysis. We hypothesized that HRQL would improve over time with worst HRQL reported postdiagnosis and best 2 years later and that child and family characteristics at the time of diagnosis would each predict HRQL 2 years postdiagnosis. Of a total of 72 pediatric neurologists treating children with newonset epilepsy in Canada. and their children were less likely to have cognitive problems ( p ϭ 0. and had more education ( p ϭ 0. Results for model selection are described in appendix e-2. children had less Neurology 79 October 9.19 Family Inventory of Life Events and Changes (FILE) indexed family stress in the previous year. 12. severity of epilepsy. were more likely to be married ( p ϭ 0. regulations and patient consents. Parents received a letter describing the study and outlining what participation entailed. in whom diagnosis had not been confirmed previously.20 Parents’ depressive symptoms were measured with the Center for Epidemiologic Studies Depression Scale (CES-D). growth curve modeling was applied to determine profiles over 2 years.21 Sociodemographic information collected included date of birth and sex (parent and child).0033). 2012 1549 Epilepsy characteristics. employment status. a multicenter prospective cohort study of children with newly diagnosed epilepsy. Parents who completed all 4 questionnaires were older ( p ϭ 0. Individual differences were captured by estimating a random coefficient representing variability around the averaged intercept and slope. Data were analyzed using SAS 9. and CHQ-Psychosocial summary scores. Partnership. Table 1 shows sample characteristics at baseline and 2 years postdiagnosis.10 ciated with adaptation to childhood epilepsy. RESULTS Sample characteristics. Measures. The classifications of the International League Against Epilepsy15. The significance level for variables to enter and remain in the model was ␣ ϭ 0.18 Two subscales (family mastery and health and extended family social support). asso- . Inclusion criteria were a new case of epilepsy (Ն2 unprovoked seizures) in a child 4Ϫ12 years old. The level of statistical significance in two-sample t tests was adjusted with the Bonferroni correction. Summary statistics and frequency distributions were used to describe the sample at baseline and 2 years. we compared CHQ subscale and summary scores from our sample of CWE postdiagnosis and 2 years later with published norms for similarly aged children from the US general population12 using two-sample t tests. and education level. or levels of HRQL. and annual household income. and Resolve (Family APGAR) assessed satisfaction with family relationships. Multiple regression using a backward.22 Finally. HRQL was assessed using an epilepsy-specific measure. primarily responsible for the child’s care for at least 6 months. Months since diagnosis was used to estimate the magnitude and direction of a single trajectory averaging all individual trajectories for the sample.org). number of children in household.17 The Family Inventory of Resources for Management (FIRM) measured resources available to aid families’ adaptation to stressful events.12 50-item version. For QOLCE-Overall.and interrater reliability. Pediatric neurologists across Canada approached parents about the study.neurology. The Tailored Design Method for surveys was followed. any behavior (0 ϭ none to 3 ϭ severe) or cognitive problems (0 ϭ none to 4 ϭ severe). All tests were two-sided using p Ͻ 0. Those with complete data did not differ from those who dropped out on children’s baseline type of seizures. using the Global Assessment of Severity of Epilepsy (GASE)13 to rate overall severity on a scale from 1 (extremely severe) to 7 (not at all severe). behavior problems. Quality of Life in Children with Epilepsy Questionnaire (QOLCE)11 (76-item version). Overall.14 specifically. stepwise algorithm identified predictive baseline factors for HRQL at 2 years. Affection.0055).9 This article describes the course of HRQL over the first 2 years postdiagnosis in children 4Ϫ12 years old and child and family risk factors at diagnosis for HRQL 2 years later. The study protocol received approval from all relevant research ethics boards. Child Health QuestionnaireϪParent Form (CHQ). Parents completed 4 mailed questionnaires (postdiagnosis and 6. METHODS Sample and procedures.who had undergone epilepsy surgery. From 456 eligible children. Scores of at least 1 SEM are interpreted as clinically important when used with psychometrically robust HRQL measures to reveal intraindividual changes. Family environment.13 They also rated comorbidities using single items adapted from previous studies. and 24 months later) and consented for their child’s neurologist to provide clinical information at the same time points.2. Analysis of variance (ANOVA) tested for differences in mean QOLCE scores across levels of categorical baseline variables. 53 (74%) recruited families with a median 9 per physician. and medication and adverse effects and classified severity of epilepsy.10. we used a standard error of measurement (SEM)Ϫbased criterion to identify how many children experienced clinically meaningful changes over 2 years. Missing data were handled according to instructions of individual scale developers.05 as statistically significant.8 Evidence suggests that CWE experience diminished HRQL compared with healthy control subjects. seen for the first time by a pediatric neurologist and a parent with sufficient English language skills. GASE has adequate content. The Family Adaptability. 283 (62%) completed all 4 questionnaires. Means were computed for each subscale and summary scale of the QOLCE and CHQ. parents of 374 returned completed postdiagnosis questionnaires (response rate 82%).0126).
FILE. Affection.5 (6.5 (2.0 42. FILE ϭ Family Inventory of Life Events and Changes. % female Parent’s marital status.0 11. mean (SD) Parent’s sex.1) 9.2 28. and FIRM scores (r ϭ 0. mean (SD) Resources.0 74.6 16. The epilepsy sample also scored lower on the CHQ-Psychosocial.0001 for each. % male Epilepsy syndrome type.8) 50. and CHQ-Physical of 44. p ϭ 0.000؊79.4 19. b One-third and one-half of these were benign childhood epilepsy with centrotemporal spikes at baseline and 24 months. Family APGAR.3 (1.3) 51. 56% experienced either no clinically important improvement (37%) or a clinically important decline (19%). Modeling the course of HRQL showed that. 61% experienced either no clinically important improvement (43%) or a clinically important decline (18%).8 (9.9 82.7. mean (SD) Demands. Again.3 21.5 32. Family APGAR ϭ Family Adaptability. FIRM ϭ Family Inventory of Resources for Management. General Health.6 5. The modelbuilding process suggested that models with quadratic time terms were adequate to describe the curvature pattern of these 3 measures ( p Ͻ 0. SEM calculated for each baseline QOLCE and CHQ subscale and the summary mean score (table 2) estimated the proportion of children who experienced clinically important changes in HRQL over 2 years. For both measures of HRQL. 2012 tween baseline risk factors and QOLCE scores 2 years later were conducted using Pearson correlations and ANOVA (table e-1).0004) had higher QOLCE scores 2 years later. Using the QOLCE-Overall. % Epilepsy severity.7) 37. CES-D. GASE Comorbidities. the course was very similar with mean scores being lowest at baseline for all subscales and highest 2 years after diagnosis for most. y. and CHQ-Physical of 47.4 37. % employed Education.8 15.3) 13.9) 50. and families were functioning well and had adequate resources and relatively few demands on them.7 (11.1 (11.7 76.60). % postsecondary Annual household income. % Generalized epilepsiesa Localization-related (partial/focal epilepsies)b Partial/focal onset and secondary generalization Not determined whether focal or generalized Antiepileptic drugs. postdiagnosis. at baseline. and families with higher income (F ϭ 5. The figure depicts parents’ reports of children’s HRQL over 2 years using the QOLCE.4 9.2 19.6 77. mean (SD) Sex. children prescribed more antiepileptic drugs (AEDs) (r ϭ Ϫ0. the largest difference was for Parent ImpactϪEmotional for which the mean for parents of CWE was still 14 points lower than that for the general population.0) 7.6 (6. We compared CHQ scores at baseline and 2 years later with published normative data from a general US population sample of 252 children aged 5Ϫ18 years (table 3).6) 92.0 1.2) 38.7 67. with no behavior (F ϭ 24.0001 for each).0001) and family .9 (3.63) or cognitive problems (F ϭ 42.5) 15. Modeling the course of HRQL.000؊59. At baseline.Table 1 Sample characteristics at baseline and 2 years Baseline (n ؍374) 2 years (n ؍283) Children Age.1 (3. Predictors of HRQL.1) 92.8 (5. The largest difference was on emotional impact on parents.999 $40.0368).4 45.4 19. p ϭ 0.999 $60.8.6 of 48. p Ͻ 0.4. the CWE remained lower on 3 subscales (one focusing on the child [RoleϪEmotional/Behavior] and 2 focusing on family impact [Parent ImpactϪEmotional and Family Activities]).9) 14. GASE ϭ Global Assessment of Severity of Epilepsy. Comparison of HRQL with that of normative controls.5 39.36. mean (SD) 22.1 38. y.5 (2. p Ͻ 0.3 (10.31).8 80. with higher parental CES-D scores (r ϭ Ϫ0. Respective growth rates were most rapid during the first 6 months after diagnosis and then slowed gradually with a 2-year mean QOLCE-Overall of 75.5) 7. Using the CHQ-Psychosocial.36. had higher QOLCE (r ϭ 0. and Resolve. p Ͻ 0. Partnership.31.3) 52.9 66.9 6.7 2. Self-Esteem. At 2 years. Clinically important changes in HRQL over 2 years. % <$39. Children who.999 >$80.8 22. CHQ-Psychosocial 1550 Neurology 79 October 9. 50% experienced either no clinically important improvement (32%) or a clinically important decline (18%). a Two-thirds of these were absence seizures at both times. % married Parent’s employment status.3 (5. CHQPsychosocial of 51. respectively. In addition.7 92.8. Growth.7. CWE had lower means on all subscales.13. patients had a mean QOLCE-Overall of 70.000 Depressive symptoms. FIRM. Course of HRQL over 2 years.001) (see supplemental information in appendix e-2). % Behavior problems Cognitive problems Family Parent’s age.4 (1. except Bodily Pain.7. The epilepsy sample also scored lower on physical and psychosocial summary scores.1 66.6 40.2 20. and Family Cohesion.6 20. Unadjusted associations be- severe types of epilepsy. On the CHQ-Physical. Family APGAR (r ϭ 0. Abbreviations: CES-D ϭ Center for Epidemiologic Studies Depression Scale. mean (SD) Functioning. % Experiencing seizures.0 14.35.
p Ͻ 0. p Ͻ 0. on average. with some children improving and some declining. and 2 years later. Individual trajectories of HRQL varied.0001) and ac- counted for nearly half the variation observed in QOLCE scores at 2 years (r2 ϭ 0. This result suggests that cognitive problems may be the driving force behind declining HRQL over 2 years. whereby predicted HRQL was highest for children with high HRQL at baseline and no cognitive problems. 2012 1551 . Neurology 79 October 9. There was a qualitative interaction between baseline HRQL and cognitive problems. Controlling for baseline HRQL. This finding is probably related to the fact that children diagnosed at these ages tend to have less severe epilepsy.30. FILE scores (r ϭ Ϫ0. higher family functioning. p Ͻ 0.23 HRQL was initially compromised and then improved over 2 years. and fewer family demands (table 4). 12 months. fewer AEDs. DISCUSSION Children aged 4Ϫ12 diagnosed with epilepsy generally have good HRQL during the first 2 years postdiagnosis on average. There is only one other published prospective study of HRQL in children with new-onset epilepsy. the risk factors for better HRQL 2 years later were absence of cognitive problems.247 ϭ 32. followed by children with low HRQL at baseline and no cognitive problems and lowest for children with high HRQL and cognitive problems at baseline. Variables significant in the unadjusted analysis were used to identify predictors of QOLCE scores at 2 years.45. This pattern probably reflects the fact that a period of acute adjustment to the diagnosis is typical over the short-term after which time less dramatic adjustments occur.0001) had lower QOLCE scores at 2 years.0001). with the largest change during the first 6 months and a slower rate of change between 6 and 24 months. however.34. The data fit the model well (F6.Figure Mean Quality of Life in Children with Epilepsy Questionnaire (QOLCE) scores (subscales and overall) Baseline and 6 months.
a component of HRQL.96 10. These predicted higher HRQL 2 years later.861 0.06 11.9 0. 2012 sample experienced seizures at 2 years compared with 93% at baseline).775 0.24 In that study. Notably.05 4.847 0.25 In fact.4 19.4 17.906 0.860 0.42 6. 2) they found.28 9.89 5.84 7.802 0.708 0.04 Abbreviations: CHQ ϭ Child Health QuestionnaireϪParent Form.61 7. SEM ϭ standard error of measurement. SD ϭ standard deviation. fewer AEDs prescribed. and 3) those who achieved seizure control in the other study did improve over time (33% of our 1552 Neurology 79 October 9. That presence of cognitive problems predicts later HRQL is understandable given that cognition is an important domain in the overall HRQL construct.8 23. Frequency of seizures negatively affected HRQL.2 24.757 0. internal consistency.687 0.848 0.26 cognitive and behavioral functioning. were absence of cognitive problems.4 21.800 0.26 The mechanism underlying the relationship between number of AEDs and HRQL is not clear.80 8.01 16.902 0.7 24.917 8. and SEMs for QOLCE and CHQ Internal consistencya Measure QOLCE Physical Restrictions Energy/Fatigue Depression Anxiety Control/Helplessness Self-Esteem Attention/Concentration Memory Language Other Cognitive Social Interactions Social Activities Behavior Overall Quality of Life CHQ Physical Functioning Role؊Emotional/Behavior Role؊Physical Bodily Pain Behavior Mental Health Self-Esteem General Health Parent Impact؊Emotional Parent Impact؊Time Family Activities Physical Summary Psychosocial Summary SD SEM 18. We think 3 of the authors’ explanations for HRQL not improving over time as anticipated may explain the differences between their findings and ours: 1) their sample received extensive education to ease adaptation to epilepsy. children with new-onset epilepsy had poorer HRQL at the first assessment on most domains.5 22.14 4. The baseline child and family risk factors that predict HRQL 2 years after diagnosis.903 0. previous research has shown that cognitive impairment in CWE is associated with diminished HRQL. which followed 118 children aged 2Ϫ12 years for 7 months to assess the effect of treatment on HRQL.33 6. Whereas previous research has shown family environment to be associated with child psychopathology. and better family environment.29 The modeling strategy showed that parental depressive symptoms was eliminated in the final step of model building (data not shown).1 15.934 0.3 14. ratings were more similar but still lower on psychosocial health.0 18. as we did.74 4.49 8.5 27. The finding that family functioning and demands were risk factors for HRQL 2 years after diagnosis is novel. QOLCE ϭ Quality of Life in Children with Epilepsy Questionnaire.27 the impact on HRQL has not been examined.8 14. except for a positive trend in emotional functioning and side effects of AEDs.12 15.930 0. and academic achievement. parents of CWE still reported much more emotional worry for their children’s health at 2 years. among children with a first seizure.9 10.1 24.19 7.909 0. Compared with published normative data of similarly aged children from the general population. specifically depressive symptoms.62 6.853 0.5 26.Table 2 Baseline SDs. a Internal consistency measured using Cronbach ␣.4 11.68 5.825 0.30 Of particular interest is the qualitative interaction between baseline HRQL and cognitive problems in .647 0.7 13.9 28.848 0. controlling for baseline HRQL.5 18.63 7. Two years later.0 24.861 6.45 7.94 9.921 0. Number of AEDs may be a proxy for difficulty controlling seizures.5 22. The effect of cognitive problems on HRQL at 2 years depends on baseline HROL.751 0.8 10. family functioning was shown to protect against declines in self-esteem. Neither severity nor type of epilepsy predicted HRQL.05 7.769 0. that individual trajectories varied with improvements in some children and declines in others.834 0.36 8.1 19.51 7.28 It is interesting that no parental characteristic.8 0.2 24.24 9.71 7. This finding is congruent with a mediation pathway and corroborates our previous work demonstrating that family functioning and demands mediate the impact of maternal depression on child HRQL in new-onset epilepsy. Further research examining the relationship between number of AEDs and neurologists’ perceptions of difficulty managing seizures is needed to better elucidate the impact on children’s HRQL. Recently.3 16.700 0. was retained in the final predictive model because depressive symptoms in parents have been associated with child HRQL in epilepsy. HRQL remained constant.
3a 83.7 22.77 p Value 0.23 Ϫ55. predicted HRQL was best for children with good HRQL at baseline and no cognitive problems. valid and reliable measures assessed child and family characteristics including both a generic and epilepsyspecific measure of HRQL.8 22.12 (0. Growth. 2012 1553 . HERQULES ϭ Health-Related Quality of Life Study in Children with Epilepsy Study. Family APGAR ϭ Family Adaptability.2 26.71. QOLCE Cognitive problems Number of antiepileptic drugs Family functioning.58.3 21. values.3 19. a methodologically rigorous modeling strategy produced a robust set of predictors.0 10.0b 84.0 15.4 48. children without cognitive problems have better outcomes during the first 2 years postdiagnosis.6 20. Children with the worst predicted HRQL at 2 years were those with good HRQL and cognitive problems at baseline. and the stability of predictors is supported by the fact that the same child and family characteristics also predicted HRQL at 12 months (data not shown).7 78.47.3 19.0 11.6 92. Affection.1 51.1 93.6a 44.5 79.6 21. good HRQL and cognitive problems at baseline.5 45. regardless of HRQL at baseline.8 74.14) 95% CI Ϫ0. b Significantly lower than normative data ( p Յ 0. 0.0 16.08.1 26.5 23.40 Ϫ4.45 (0.1 13. 259 256 259 260 260 260 259 260 259 259 259 260 254 254 Mean 93.7 26.8 10.2a 74.4950 Ͻ0.9 18.3 10.2 89.002).1 20.5 70. Controlling for number of AEDs and family environment.4 82. First.3 24. their experience with epilepsy and developing coping mechanisms may lead to a more positive recalibration of HRQL at 2 years postdiagnosis. Ϫ0.7 19.5 23.7 72.8 84. incident cases with diverse types of epilepsy were included so that results would be useful during the initial medical consultation to promote the best possible HRQL in CWE.5 19.23 (1.31 Thus.1 b SD 16.31 Further exploration of potential response shift is needed to substantiate this hypothesis.8 Mean 95.49 (0. This finding may be attributed to the phenomenon of response shift: a change in the meaning of parents’ evaluation of children’s HRQL resulting from a change in parents’ internal standards.6 a Abbreviations: CHQ ϭ Child Health QuestionnaireϪParent Form.9 52.6 28.5 76.56 (9. Partnership.2 65.3 19. suggesting that cognitive problems may be the driving force behind declining HRQL during the first 2 years.0180 0.4 27.7 50. This study has several strengths: it was a large.6 48.1 87.0766 0.2b 89.72.9 SD 15.2 75.4 9. predicting HRQL at 2 years.2 80. FILE Health-related quality of life ؋ cognitive problems Abbreviations: CI ϭ confidence interval.0a 73.24 0.1 76.2 18.9 20.8a 74.2 78.5 68.2 17. QOLCE ϭ Quality of Life in Children with Epilepsy Questionnaire.0 78. followed by children with poor HRQL at baseline and no cognitive problems.12) 0.9 17. 341 338 338 337 341 340 339 341 339 339 341 341 326 326 Mean 91.8 a a a HERQULES (2 years) No. This result suggests that.1 78.21.19) Ϫ0.4 71. and Resolve.0066 0. Children with poor HRQL and cognitive problems at baseline have slightly better HRQL at 2 years than children with Table 4 Regression model of significant baseline risk factors for 2-year QOLCE scores ␤ Coefficient (SE) Ϫ0. Ϫ19. 0.5 14.18) Ϫ37. prospective cohort study with strong response and retention rates.0 HERQULES (baseline) CHQ score Physical Functioning Role؊Emotional/Behavior Role؊Physical Bodily Pain Behavior Mental Health Self-Esteem General Health Parent Impact؊Emotional Parent Impact؊Time Family Activities Family Cohesion Physical Summary Psychosocial Summary No.0001 0. Family APGAR Family demands.3a 86.5 78.9 24. 0. or concept of HRQL.0 68. there were parent and neurologist reports but no patient Neurology 79 October 9.001). multicenter. whereas the initial stress associated with the diagnosis may lead parents to report poor HRQL in their children.6 18.33 (0. FILE ϭ Family Inventory of Life Events and Changes.09 0. The study also has some limitations. a Significantly lower than normative data ( p Յ 0.26) 0. 0.4 71.2 84.22) Ϫ2.Table 3 Comparisons of CHQ mean scores for children with new-onset epilepsy at baseline and 2 years with published normative data from a general US population sample US normative data (n ؍252) SD 16.0008 Parameter Health-related quality of life.2 9.81 Ϫ0.8 19.1 17.8 22.
1:120 –127. The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability. and had higher education and income. Wiebe: study design. Marie-Emmanuelle Dilenge.N. Kevin Gordon. M. Charuta Joshi. Epilepsy Behav 2005.42:621– 628. revising manuscript for content. obtaining funding. Huang: analysis of data for course of HRQL. 5. in Nova Scotia: Carol Camfield. in the absence of Canadian general population norms for HRQL. Kevin Farrell. it is included in the subsequent follow-up of this cohort currently under way. S.80:180 –183. and Michael Salman. Smith: study design. Glassman M. Betty Koo. Elliott IM. Although not ideal. Levin: study concept and design. Narayan Prasad. W. Epilepsia 1999. or level of HRQL. possibly not representative of all families of a child with epilepsy. obtaining funding. Bleasel AF. 2012 risk for poor HRQL would have a positive impact on the level of HRQL children achieve. Albert Larbrisseau. C. acquisition of data. Received November 7. 40:1715–1720. obtaining funding. ACKNOWLEDGMENT The authors gratefully acknowledge the parents and physicians and their staff. Smith ML. we recruited from pediatric neurology practices. there was some attrition. Bruce Bjornson. Speechley: study concept and design. Although some children are diagnosed by primary care pediatricians or family practitioners. Camfield C. 6. Wayne Langburt. Bev Prieur. in Newfoundland: Muhammad Alam and David Buckley. 2. There may be value in evaluating whether a family-centered approach beginning at diagnosis that includes supportive resources targeting families with children at high 1554 Neurology 79 October 9. in New Brunswick: David Meek. Jankovic SV. Cairns DR. study supervision. Chantel Poulin. Elaine Wirrell. and Michel Vanasse. Asif Doja. We demonstrated previously that it may be feasible to recruit a representative population-based sample of CWE by sampling pediatric neurologists. Simon Levin. Parents completing all questionnaires tended to be older. and Ellen Wood.org for full disclosures. 2011. Go to Neurology. 2012. behavior problems. revising manuscript for content. Pam Cooper.D. Risk factors for poor health-related quality of life in adolescents with epilepsy. Peter Camfield. Our results suggest that it may be possible to identify children at risk for compromised HRQL soon after diagnosis of epilepsy. Paola Diadori. and Jerome Yager. which might produce a biased subsample at the 2-year follow-up. Epilepsia 2001. Mubeen Rafay. in Quebec: Lionel Carmant. Thus. Because only children 8 years of age or older can reliably self-report. and Conrad Yim. in Alberta: Karen Barlow. In support of mothers as reporters. Joe Dooley.33 Parent report has been found to be an adequate substitute for child report at the group level. I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life. 4. we compared our results with US norms for the CHQ. and it would have been impossible to ascertain whether children completed questionnaires independently. Westbrook L. The Canadian Pediatric Epilepsy Network effectively facilitated the participation of physician contributors across the country: in British Columbia: Coleen Adams. Pierre Jacob. Zou: study design. Jankovic SM. it is not feasible to recruit a random sample of such physicians in a large national study. Epilepsy Res 2008. it is a common practice based on an assumption that parents in the 2 countries probably report their children’s HRQL similarly. Alison Moore. were more likely to be married. drafting and revising manuscript for content. Camfield: study design. revising manuscript for content. Family physicians referred between 80 and 99% of CWE (depending on type) to a pediatric neurologist. REFERENCES 1. obtaining funding. Jean Mah. especially Jane Terhaerdt. and Katherine Wambera.7:664 – 678. as used here. we previously reported encouraging results from this same sample that mothers’ reports of children’s HRQL were not affected by mothers’ depressive symptoms.L. Lach L. Robert Munn. Second. Devinsky O. presenting an opportunity to target families for resources.34 but a recent study of CWE35 found that parents reported poorer HRQL than children themselves.report. obtaining funding. Jakovljevic MB. our sample may be biased toward families with more resources to deal with epilepsy. revising manuscript for content. in Saskatchewan: Richard Huntsman. supervision of statistical analysis. Lawrence Richer. and Shashi Seshia. Juliette Hukin. as is typical of longitudinal studies. S. G.Y. Schachter SC. in Ontario: Craig Campbell. revising manuscript for content. Daniel Keene.25:S24 –S26. Steven Miller. AUTHOR CONTRIBUTIONS K. Margaret Clark. Lorie Hamiwka.A.S. without whose participation this study would not have been possible and thank the HERQULES staff. severity of epilepsy. Minh Nguyen. the impact of epilepsy on children’s HRQL may be underestimated. interpretation of data. Michael Shevell. 3. Epilepsy: quality of life and cost of care. Inverse correlation of valproic acid serum concentrations and quality of life in adolescents with epilepsy. Noel Lowry. Barry Sinclair. Recognizing the importance of patient report. Jones MW. Sabaz M. Sharon Whiting. Mary Connolly. Todorovic N. A mail survey was the most viable data collection strategy. Finally. DISCLOSURE The authors report no disclosures relevant to the manuscript. Children for whom we have complete follow-up did not differ from those lost to follow-up on baseline type of seizures.32 not all participants were eligible. Kathryn Selby. obtaining funding. 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