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Official Journal of the European Paediatric Neurology Society

Editorial

Epilepsy in childhood and quality of life Commentary on Reilly et al. Factors associated with quality of life in active childhood epilepsy: A population-based study. Sitting in a busy epilepsy clinic it is perhaps too easy to focus simply on making an accurate syndrome diagnosis, assessing seizure frequency or duration, and checking for medication side-effects. It is also possible to be slightly too reassuring about the apparently “benign” epilepsies such as childhood absence epilepsy (CAE) or benign focal seizures with centro-temporal spikes (BECCTS). Too infrequently do we have time to think about the impact of the diagnosis we make on our patient's quality of life. And yet, it is the patient's quality of life that is the most important variable for us to try and improve. In recent years there has been much work looking at the impact of epilepsy in childhood on quality of life. However, the results of these studies are perhaps not as well known as they should be and some of the key points of these studies are worth reiterating. The main point is that childhood epilepsy has a significant effect on the psychosocial well-being of our patients. Its impact is far greater than in other chronic childhood conditions such as diabetes, asthma or cerebral palsy.1 Not surprisingly it is the symptomatic epilepsies, which seem to have the worse impact. In the early 2000s Annie Bye's group from Sydney published some important papers on Quality of Life in epilepsy.2,3 They demonstrated that the symptomatic partial epilepsy syndromes were associated with a poorer health related quality of life than the benign focal idiopathic epilepsy syndrome BECCTS or the idiopathic generalized epilepsy syndrome, CAE. However, worryingly, they also demonstrated that quality of life in both CAE and BECCTS were significantly worse than population norms. What specific factors in our children with epileptic seizures are likely to affect quality of life? The presence of learning disability undoubtedly has a negative impact and this has been demonstrated as an independent risk factor for poor QOL in children with refractory epilepsy and in specific syndrome diagnoses.3,4 Similarly the presence of psychiatric morbidity will have a dramatic impact on QOL.5 In this edition Reilly6 et al. make an important contribution to the literature on quality of life in epilepsy. Many previous studies in this area have looked at populations of children with refractory epilepsy in specialist clinic settings but Reilly et al. have conducted a population based study that avoids some of the selection biases of previous studies. They not only

recorded parent reported quality of life in their sample but also assessed cognitive status and screened the children for autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), Developmental Co-ordination Disorder (DCD), and anxiety. Children who were developmentally able also completed measures of depression and anxiety. Importantly, they found that parent reported difficulty with school attendance, early onset seizures before 24 months, the presence of anxiety and cognitive impairment were all associated with lower quality of life scores. The clinical significance of this is that factors such as school attendance and internalizing psychiatric disorders such as anxiety and depression are amenable to intervention and raise the possibility of clinicians being able to positively impact on quality of life. There is no doubt that we need to try and make a positive impact. Epilepsy does not have to be severe or ongoing to impact negatively on children's’ lives. Children with just a single epileptic seizure may have impaired QOL and the impact of epilepsy may be life-long.7,8 Childhood epilepsy, even when brief or well-controlled, is associated with lower rates of employment, lower socioeconomic status and lower rates of marriage in adulthood. The need for us to improve the psychosocial impact of epilepsy is undoubtedly pressing.

references

1. Moreira H, Carona C, Silva N, et al. Psychological and quality of life outcomes in pediatric populations: a parent-child perspective. J Pediatr 2013;163:1471e8. 2. Sabaz M, Cairns DR, Bleasel AF, et al. The health-related quality of life of childhood epilepsy syndromes. J Paediatr Child Health 2003;39:690e6. 3. Sabaz M, Cairns DR, Lawson JA, et al. The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability. Epilepsia 2001;42(5):621e8. 4. Brunklaus A, Dorris L, Zuberi SM. Co-morbidities and predictors of health-related quality of life in Dravet syndrome. Epilepsia 2011;52(8):1476e82. 5. Johnson EK, Jones JE, Seidenberg M, et al. The relative impact of anxiety, depression and clinical seizure features on healthrelated quality of life in epilepsy. Epilepsia 2004;45(5):544e50.

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6. Reilly C, Atkinson P, Das KB, et al. Factors associated with quality of life in active childhood epilepsy: a population-based study. Eur J Pediatr Neurol 2015. 7. Modi AC, King AS, Monahan SR, et al. Even a single seizure negatively impacts pediatric health-related quality of life. Epilepsia 2009;50(9):2110e6. 8. Sillanpaa M, Haataja L, Shinnar S. Perceived impact of childhood-onset epilepsy on quality of life as an adult. Epilepsia 2004;45(8):971e7.

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Finbar J.K. O'Callaghan UCL e Institute of Child Health, UK E-mail address: [email protected] http://dx.doi.org/10.1016/j.ejpn.2015.03.004 1090-3798/© 2015 Published by Elsevier Ltd on behalf of European Paediatric Neurology Society.

Epilepsy in childhood and quality of life.

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