Abstract

Developmental Medicine & Child NeurologyVolume 62, Issue 11 p. 1336-1339 CorrigendumFree Access Corrigendum This article corrects the following: Quality of life in adolescents with epilepsy, cerebral palsy, and population norms Uliana Boldyreva, David L Streiner, Peter L Rosenbaum, Gabriel M Ronen, Volume 62Issue 5Developmental Medicine & Child Neurology pages: 609-614 First Published online: January 3, 2020 First published: 04 October 2020 https://doi.org/10.1111/dmcn.14619AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat In the article by Boldyreva et al.,1 there were errors in the manuscript when reverse-coded responses were used for the Parenting Stress Index (PSI) for the epilepsy group. As a result, the authors re-did the analyses using the correct data and have reinterpreted the findings with the new data. In addition, incorrect numbers were reported in the text for the final number of participants for two of the four groups: the epilepsy group and the cerebral palsy (CP) group. Changes have to be made in 12 places: (1) ‘Method’ section of the Abstract, (2) ‘Results’ section of the Abstract, (3) What this paper adds, (4) introductory section of the Method, (5) Table 1, (6) ‘Participants’ section of the Method, (7) ‘Measures and statistical analysis’ section of the Method, (8) Results, (9) Table 4, (10) Discussion, (11) Conclusion, and (12) References. Please note that the correct number of participants was used during all calculations, so the recorded number of participants does not affect any of the reported findings or anything else written in the paper. Regarding the PSI data, the only results that were changed were PSI numbers in the epilepsy group, so these changes do not affect any of the data for the CP and ‘both CP and epilepsy’ groups, or any of the reported data/findings related to KIDSCREEN and quality of life. Please find the detailed corrections below. Changes are indicated in bold type. 1. ‘Method’ section of the Abstract Original: This was a cross-sectional observational study with 496 adolescents with epilepsy, 699 with CP, 192 with both CP and epilepsy, and 15 396 from the general population. Corrected: This was a cross-sectional observational study with 362 adolescents with epilepsy, 468 with CP, 192 with both CP and epilepsy, and 15 396 from the general population. 2. ‘Results’ section of the Abstract Original: PSI scores were better for parents of adolescents with CP than for parents of adolescents with epilepsy (d=2.12, d=2.70, d=3.35, d=1.67). Corrected: PSI scores were better for parents of adolescents with epilepsy than for parents of adolescents with CP (d=0.587) and with both CP and epilepsy (d=1.03, d=0.613, d=0.528). 3. What this paper adds Original: Parental stress was lower in parents of children with CP or both CP and epilepsy, than in those with only epilepsy. Corrected: Parental stress was higher in parents of children with CP or both CP and epilepsy, than in those with only epilepsy. 4. Introductory section of the Method Original: The data for the epilepsy group were taken from Visit 5 of a longitudinal Canadian study by the QUALITÉ group. Corrected: The data for the QoL and PSI of the epilepsy group were taken from Visits 5 and 4, respectively, of a Canadian study by the QUALITÉ group. 5. Table 1 (Only part of Table 1 is shown below, the rest is unchanged). Original: Epilepsy CP Total participants (n) 496 699 Female (n) 246 283 Corrected: Epilepsy CP Total participants (n) 362 468 Female (n) 184 195 6. ‘Participants’ section of the Method Original: Ten participants in the epilepsy group had CP and were excluded. Corrected: Ten participants in the epilepsy group had CP. Independent t-tests comparing these participants to those without CP showed no statistically significant differences in QoL and PSI scores, and so they were excluded. Original: After these exclusions, the participants included 496 adolescents with epilepsy, 699 with CP, 192 with both CP and epilepsy, and 15 396 from the general European population. Corrected: After these exclusions, the participants included 362 adolescents with epilepsy, 468 with CP, 192 with both CP and epilepsy, and 15 396 from the general European population. 7. ‘Measures and statistical analysis’ section of the Method Original: The PSI used in this study included data for the domains of parental distress, parent-child interaction, difficult child, and defensive responding. Corrected: The PSI used in this study included data for the domains of parental distress, parent-child interaction, and difficult child. 8. Results Original: The PSI results from parents of adolescents with epilepsy or CP showed clinically important differences in all four domains: defensive responding (d=2.12), parental distress (d=2.70), parent-child interaction (d=3.35), and difficult child domains (d=1.67). In all domains, the parents of adolescents with epilepsy showed much higher stress scores than the parents of adolescents with CP. Corrected: The PSI results from parents of adolescents with epilepsy or CP showed clinically important differences in all three domains: parental distress (d=0.587, d=1.03), parent-child interaction (d=0.613), and difficult child domains (d=0.528). In the parental distress domain, parents of adolescents with epilepsy showed lower stress scores than the parents of adolescents with CP. In all domains, the parents of adolescents with epilepsy showed lower stress scores than the parents of adolescents with both CP and epilepsy. 9. Table 4 (The footnote to Table 4 is unchanged). Original: Table 4: Parenting Stress Index (PSI) data and results of an independent t-test for the epilepsy and cerebral palsy (CP) groups Domain Epilepsy CP CP and epilepsy p Cohen’s d Defensive responding 28.5 (5.3)a,b 16.7 (5.7)a 19.0 (5.7)b <0.001 2.12a 1.71b Parental distress 50.4 (8.4)a,b 26.7 (9.1)a 30.6 (9.3)b <0.001 2.70a 2.24b Parent-child interaction 49.5 (8.0)a,b 24.0 (7.3)a 27.0 (7.2)b <0.001 3.35a 2.96b Difficult child 42.9 (8.6)a,b 27.7 (9.6)a 31.0 (9.0)b <0.001 1.67a 1.35b Corrected: Table 4: Parenting Stress Index (PSI) data and results of a one-way analysis of variance for the epilepsy, cerebral palsy (CP), and epilepsy and CP groups Domain Epilepsy CP CP and epilepsy p Cohen’s d Parental distress 21.7 (7.9)a,b 26.7 (9.1)a 30.6 (9.3)b <0.001 0.587a 1.03b Parent-child interaction 22.9 (7.9)a 24.0 (7.3) 27.0 (7.2)a <0.001 0.613a Difficult child 26.3 (9.2)a 27.7 (9.6) 31.0 (9.0)a <0.001 0.528a 10. Discussion Original: Parents of young people in the epilepsy group showed significantly higher PSI scores in all four domains than parents in the CP group and parents in the combined epilepsy/CP group. Considering the relative similarity of the KIDSCREEN-52 results for the three populations, such a significant discrepancy in scores was unexpected. However, similar differences have been reported when compared to other chronic disorders such as asthma, attention-deficit/hyperactivity disorder, and autism.16 As these studies used different versions of the PSI, the scores could not be directly compared to those used in this study.16 A possible reason for these results is the unpredictable nature of epilepsy. In addition, the loss of control associated with seizures increases the discrimination that children face.16 While this study looks at Canadian and European populations, the parental stress associated with epilepsy is even higher in developing countries.21,22 The strong social stigma against those with epilepsy increases parental stress, apparently due to feelings of guilt and blame placed on the mothers.21,22 The adjustment period is extremely difficult and some even hide the diagnosis from their friends and family.21,22 Regardless of the location, more social support is necessary for families impacted by epilepsy, and this support should not be limited to the individual with the condition. Moreover, the parenting stress could be heightened because of the approaching transition out of school and into adult life and more support and services should be in place to aid the parents and their children through this transition. Corrected : Parents of young people in the epilepsy group showed lower PSI scores in all three domains than parents in the combined epilepsy/CP group and lower scores than the parents in the CP group in the parental distress domain. Considering the clinically important KIDSCREEN-52 results for the three populations, these results were expected. These findings are consistent with studies that show cerebral palsy to be associated with higher levels of parenting stress than seen in other chronic conditions.21 Increased parental stress was seen in conditions with persistent physical and cognitive impairments and high support needs.21 Parental stress in parents of children with CP was impacted more by the increased care-giving demands associated with CP, than by the disability itself.22 In a focus group study by Whittingham et al., parents stated that the increased level of stress is associated with grief relating to their child’s developmental delays, even years after diagnosis.23 Positive parenting was more challenging in public due to feelings of shame or embarrassment which contributed to stress levels.23. Despite higher stress in the CP group in the parental distress domain, it is important to note that the parental distress experienced by parents of adolescents with epilepsy was only slightly lower than the parents of adolescents with CP and still must be considered to be important. Due to the unpredictable nature of epilepsy, and the loss of control associated with seizures, parental stress in epilepsy is still high when compared to other chronic disorders such as asthma, attention-deficit/hyperactivity disorder, and autism.16 While this study looks at Canadian and European populations, the parental stress associated with epilepsy and CP is even higher in developing countries.22,24,25 The strong social stigma against those with epilepsy increases parental stress, apparently due to feelings of guilt and blame placed on the mothers.24,25 The adjustment period is extremely difficult and some even hide the diagnosis from their friends and family.24,25 Similarly, parenting stress in CP is higher in developing countries where medical, educational, and social services for the disabled are severely lacking.22 As shown by our data, the parents of adolescents with both CP and epilepsy show the highest levels of stress of the three groups. Epilepsy and CP bring different sets of physical and cognitive challenges to children and their parents; however, when a child has both, this combination contributes to the burden of care and makes delegation of supervision even more difficult.26 In addition, parenting stress could also be impacted by the child’s cognitive abilities, as children with CP who are more likely to develop seizures often also show signs of developmental challenges.27 Regardless of the country or prevalence of comorbidities, more social support is necessary for families impacted by epilepsy and CP, and this support should not be limited to the individual with the condition. Moreover, the parenting stress could be heightened because of the approaching transition out of school and into adult life and more support and services should be in place to aid the parents and their children through this transition. Original: Whereas the longitudinal classes of QoL in epilepsy were evaluated, a potential limitation of this study was the lack of longitudinal information on QoL trends in CP.23,24 Corrected: Whereas the longitudinal classes of QoL in epilepsy were evaluated, a potential limitation of this study was the lack of longitudinal information on QoL trends in CP.28,29 11. Conclusion Original: The parents of the epilepsy group showed much higher parenting stress levels than the CP and epilepsy/CP groups. Corrected: The parents of the epilepsy group showed lower parenting stress levels than the CP and epilepsy/CP groups. 12. References Original 21. Singhi PD, Goyal L, Pershad D, Singhi S, Walia BN. Psychosocial problems in families of disabled children. Brit J Med Psychol 1990; 63: 173–82. 22. Austin JK, McBride AB, Davis HW. Parental attitude and adjustment to childhood epilepsy. Nurs Res 1984; 33: 92–6. 23. Ferro MA, Avery L, Fayed N, et al. Child and parent reported quality of life trajectories in children with epilepsy: a prospective cohort study. Epilepsia 2017; 58: 1277–86. 24. Fayed N, Avery L, Davis AM, et al. Parent proxy discrepancy groups of quality of life in childhood epilepsy. Value Health 2019; 22: 822–8. Corrected 21. Pinquart M. Parenting stress in caregivers of children with chronic physical condition—A meta-analysis. Stress Health 2018; 34: 197–207. 22. Ong LC, Afifah I, Sofiah A, Lye MS. Parenting stress among mothers of Malaysian children with cerebral palsy: predictors of child-and parent-related stress. Ann Trop Paediatr 1998; 18: 301–7. 23. Whittingham K, Wee D, Sanders M, Boyd R. Responding to the challenges of parenting a child with cerebral palsy: a focus group. Disabil Rehabil 2011; 33: 1557–67. 24. Singhi PD, Goyal L, Pershad D, Singhi S, Walia BN. Psychosocial problems in families of disabled children. Brit J Med Psychol 1990; 63: 173–82. 25. Austin JK, McBride AB, Davis HW. Parental attitude and adjustment to childhood epilepsy. Nurs Res 1984; 33: 92–6. 26. Wallace SJ. Epilepsy in cerebral palsy. Dev Med Child Neurol 2001; 43: 713–7. 27. Singhi P, Jagirdar S, Khandelwal N, Malhi P. Epilepsy in children with cerebral palsy. J Child Neurol 2003; 18: 174–9. 28. Ferro MA, Avery L, Fayed N, et al. Child and parent reported quality of life trajectories in children with epilepsy: a prospective cohort study. Epilepsia 2017; 58: 1277–86. 29. Fayed N, Avery L, Davis AM, et al. Parent proxy discrepancy groups of quality of life in childhood epilepsy. Value Health 2019; 22: 822–8. The authors apologize for the errors and any inconvenience this may cause. Reference 1Boldyreva U, Streiner DL, Rosenbaum PL, Ronen GM. Quality of life in adolescents with epilepsy, cerebral palsy, and population norms. Dev Med Child Neurol 2020; 62: 609– 14. Volume62, Issue11November 2020Pages 1336-1339 ReferencesRelatedInformation

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