DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY
COMMENTARIES
Family matters – social competence in children with epilepsy MARK A FERRO Departments of Psychiatry & Behavioural Neurosciences and Pediatrics, McMaster University, Hamilton, ON, Canada. doi: 10.1111/dmcn.12542 This commentary is on the original article by Zhao et al. on pages 37–44 of this issue.
Epilepsy is one of the most common neurological disorders in childhood and its effects are pervasive, affecting social, cognitive, physical, and behavioural functioning in children. Recognized as epilepsy-related conditions, understanding the causes of and improving treatment options for these psychosocial complications are part of the National Institutes of Health/National Institute of Neurological Disorders and Stroke (NIH/NINDS) benchmarks for epilepsy research. The benchmarks also include understanding the causes of the epilepsies, preventing epilepsy and its progression, improving treatment options for controlling seizures, and limiting the adverse consequences of seizures and their treatment across the lifespan.1 While impairment in social functioning is considered a central component of psychological disorders of childhood, few studies have prospectively examined social competence in children with epilepsy.2 Recognizing this gap in research, Zhao et al.3 report on the longitudinal trajectories of behaviour problems and social competence in a clinical sample of children with new-onset idiopathic generalized and localization-related epilepsies. This study is timely because the effects of having epilepsy during childhood span the life-course, contributing to the poor academic, vocational, and social outcomes reported for this population. Thus, examining trajectories from, or soon after diagnosis is very informative. Also, descriptive comparative investigations are the first step in moving towards causal modeling studies that aim to elucidate the developmental mechanisms leading to behaviour problems and impairments in social competence in children with epilepsy. The baseline differences in behaviour problems and social competence between children with epilepsy and healthy children, as well as the declining trend in behaviour problems among children with epilepsy are consistent with previous empirical studies.4,5 What is novel is the stable impairment in social competence among children with epilepsy during the follow-up. Without other prospective studies to refer to, addressing the ‘why?’ question presents a unique challenge. This lack of knowledge makes it difficult to delineate the natural course of social competence, iden-
6
tify risk and protective factors for deficits in social competence, and develop age-appropriate interventions in childhood epilepsy. One conceptual framework in childhood epilepsy suggests that along with underlying pathophysiological and neurocognitive features of epilepsy, the family environment can influence the social competence of children.2 Because parents of children with epilepsy often (unjustifiably) adopt restrictive or over-protective parenting styles, impairments in child social competence may be resistant to improvement. Such parenting styles may isolate children with epilepsy, preventing them the opportunities to develop competence in social functioning. Whether changes in parenting style result in improved psychosocial outcomes for children with epilepsy remains an important, unanswered question. The notion that the family environment is linked to child health is not unique to social competence. In studies that have examined other psychosocial outcomes in childhood epilepsy, it becomes apparent that aspects of the family environment such as functioning, parenting style, and parent–child relations are robust determinants of child health.6 Importantly, the family environment is responsive to approaches to health care that are familycentred, respectful of the family–clinician partnership, and recognize the strengths, traditions, and expertise of family members. Supporting a healthy family environment can facilitate the best possible health outcomes for children. In the context of paediatric neurology, there is evidence to suggest that independent of illness severity, the degree to which health care is family-centred is positively associated with health-related quality of life in children with a neurological condition, including epilepsy.7 Brief screening tools for parental stress and mental health, as proxies for the family environment, that are valid and reliable are available and can easily be incorporated during routine clinic visits to help personalize family-centred approaches. Moving research forward in this area requires a shift from descriptive comparative studies to studies that comprehensively investigate the possible family-level mediating and moderating factors that link childhood epilepsy and impairments in social competence and other psychosocial outcomes more broadly. Such investigations would make important contributions to paediatric neurology by informing family-centred care strategies and the allocation of resources in an effort to support the healthy psychosocial development of children with epilepsy.
© 2014 Mac Keith Press
REFERENCES 1. National
Institutes
Neurological
of
Disorders
Health/National and
Stroke
Institute of
(NIH/NINDS).
children with new onset epilepsy. Dev Med Child Neurol 2015; 57: 37–44.
and family stress factors predict health-related quality in
(2013) 2014 NINDS benchmarks for epilepsy research.
4. Austin JK, Perkins SM, Johnson CS, et al. Behavior prob-
Available from: http://www.ninds.nih.gov/research/epilepsy
lems in children at time of first recognized seizure and
web/2014benchmarks.htm (accessed 23 April 2014).
changes over the following 3 years. Epilepsy Behav 2011;
2. Rantanen K, Eriksson K, Nieminen P. Social competence in children with epilepsy – a review. Epilepsy Behav 2012; 24: 295–303. 3. Zhao Q, Rathouz PJ, Jones JE, et al. Longitudinal trajectories of behavior problems and social competence in
6. Wu Y, Follansbee-Junger K, Rausch J, Modi A. Parent
21: 373–81.
pediatric patients with new-onset epilepsy. Epilepsia 2014; 55: 866–77. 7. Moore MH, Mah JK, Trute B. Family-centred care and health-related quality of life of patients in paediatric neu-
5. Hamiwka LD, Hamiwka LA, Sherman EMS, et al. Social
rosciences. Child Care Health Dev 2009; 35: 454–61.
skills in children with epilepsy: how do they compare to healthy and chronic disease controls? Epilepsy Behav 2011; 21: 238–41.
Challenges in using hospital billing databases for epidemiology BERNARD DAN H^opital Universitaire des Enfants Reine Fabiola, Universite Libre de Bruxelles, Brussels, Belgium. doi: 10.1111/dmcn.12568 This commentary is on the original article by Wagner et al. on pages 45–52 of this issue.
Hospitals increasingly organize systematic recording of their activities in terms of clinical diagnosis, procedures, complications, or comorbidities; items, among others, that could lend themselves to analysis. Resulting databases have been used primarily as financing tools. They enable hospitals to monitor the utilization of resources and quality of service by relating patients’ characteristics to the costs involved in their care. It is tempting to use such databases for health surveillance purposes. More particularly, they seem to have immediate appeal for clarifying the epidemiology of specific health problems, for which there is a lack of population survey data. For example, data on migraine or epilepsy in childhood are currently scarce compared to other chronic conditions that have a similar impact on public health.1 The available information is also generally of too limited an accuracy to effectively promote better practice in order to ameliorate outcomes, mostly because of insufficient standardization in data collection and problems with ascertainment. For want of adequate surveillance data, researchers and policymakers have been suggested to be ‘flying blind’2 in their efforts to inform and improve public health practice. Wagner et al.3 in their article focus on the neurodevelopmental and psychiatric comorbidity of epilepsy and migraine in children. In these conditions, the burden of comorbidities is often regarded as outweighing that of the primary condition.4 Surveillance of these comorbidities may therefore prove particularly important for designing
appropriate intervention strategies. The authors approached this topic by analyzing coded diagnoses based on a selection of categories from the International Classification of Disease Ninth Revision, Clinical Modification (ICD-9-CM) recorded through a hospital billing system. Datasets derived from such billing data have been used in a similar way in other public health surveillance systems in South Carolina and elsewhere. The use of disorder-specific codes for case ascertainment has been shown to be more cost effective than actually reviewing medical records or interviewing each individual in the study population.5 Yet, it must be borne in mind that this coding process was originally designed for optimizing billing, which may influence the estimation of comorbid conditions. More generally, using classification system codes for surveillance purposes remains difficult. The ICD-9-CM has limited specificity with regard to the aetiology of epilepsy, and this limits accuracy in addressing risk factors and analyzing outcomes by cause. Coding also blurs much of the refinement required for clinically relevant characterization of epilepsy, migraine, and comorbidity, whereas this is critical for epidemiological studies. Categorical constructs may be illadapted to the paediatric context, for example ‘alcohol misuse’, ‘alcoholism’, and ‘alcohol abuse’ may entertain some confusion and make interpretation difficult. Diagnostic accuracy and case ascertainment also depend on other factors, such as the limitations of the source of the data, and they are difficult to validate. Particularly in recording for billing purposes, coding practices are expected to vary widely between the different people providing data, at least in terms of level of detail and precision, and this may potentially lead to under- or over-diagnosis.5 The issue of the clinical basis on which coding is performed is especially sensitive as, for example, most of the psychiatric diagnoses are difficult to make and require specialized expertise. Moreover, the question of the representativeness of the studied population remains unsolved as it is difficult to
Commentaries 7
COMMENTARIES
Family matters – social competence in children with epilepsy MARK A FERRO Departments of Psychiatry & Behavioural Neurosciences and Pediatrics, McMaster University, Hamilton, ON, Canada. doi: 10.1111/dmcn.12542 This commentary is on the original article by Zhao et al. on pages 37–44 of this issue.
Epilepsy is one of the most common neurological disorders in childhood and its effects are pervasive, affecting social, cognitive, physical, and behavioural functioning in children. Recognized as epilepsy-related conditions, understanding the causes of and improving treatment options for these psychosocial complications are part of the National Institutes of Health/National Institute of Neurological Disorders and Stroke (NIH/NINDS) benchmarks for epilepsy research. The benchmarks also include understanding the causes of the epilepsies, preventing epilepsy and its progression, improving treatment options for controlling seizures, and limiting the adverse consequences of seizures and their treatment across the lifespan.1 While impairment in social functioning is considered a central component of psychological disorders of childhood, few studies have prospectively examined social competence in children with epilepsy.2 Recognizing this gap in research, Zhao et al.3 report on the longitudinal trajectories of behaviour problems and social competence in a clinical sample of children with new-onset idiopathic generalized and localization-related epilepsies. This study is timely because the effects of having epilepsy during childhood span the life-course, contributing to the poor academic, vocational, and social outcomes reported for this population. Thus, examining trajectories from, or soon after diagnosis is very informative. Also, descriptive comparative investigations are the first step in moving towards causal modeling studies that aim to elucidate the developmental mechanisms leading to behaviour problems and impairments in social competence in children with epilepsy. The baseline differences in behaviour problems and social competence between children with epilepsy and healthy children, as well as the declining trend in behaviour problems among children with epilepsy are consistent with previous empirical studies.4,5 What is novel is the stable impairment in social competence among children with epilepsy during the follow-up. Without other prospective studies to refer to, addressing the ‘why?’ question presents a unique challenge. This lack of knowledge makes it difficult to delineate the natural course of social competence, iden-
6
tify risk and protective factors for deficits in social competence, and develop age-appropriate interventions in childhood epilepsy. One conceptual framework in childhood epilepsy suggests that along with underlying pathophysiological and neurocognitive features of epilepsy, the family environment can influence the social competence of children.2 Because parents of children with epilepsy often (unjustifiably) adopt restrictive or over-protective parenting styles, impairments in child social competence may be resistant to improvement. Such parenting styles may isolate children with epilepsy, preventing them the opportunities to develop competence in social functioning. Whether changes in parenting style result in improved psychosocial outcomes for children with epilepsy remains an important, unanswered question. The notion that the family environment is linked to child health is not unique to social competence. In studies that have examined other psychosocial outcomes in childhood epilepsy, it becomes apparent that aspects of the family environment such as functioning, parenting style, and parent–child relations are robust determinants of child health.6 Importantly, the family environment is responsive to approaches to health care that are familycentred, respectful of the family–clinician partnership, and recognize the strengths, traditions, and expertise of family members. Supporting a healthy family environment can facilitate the best possible health outcomes for children. In the context of paediatric neurology, there is evidence to suggest that independent of illness severity, the degree to which health care is family-centred is positively associated with health-related quality of life in children with a neurological condition, including epilepsy.7 Brief screening tools for parental stress and mental health, as proxies for the family environment, that are valid and reliable are available and can easily be incorporated during routine clinic visits to help personalize family-centred approaches. Moving research forward in this area requires a shift from descriptive comparative studies to studies that comprehensively investigate the possible family-level mediating and moderating factors that link childhood epilepsy and impairments in social competence and other psychosocial outcomes more broadly. Such investigations would make important contributions to paediatric neurology by informing family-centred care strategies and the allocation of resources in an effort to support the healthy psychosocial development of children with epilepsy.
© 2014 Mac Keith Press
REFERENCES 1. National
Institutes
Neurological
of
Disorders
Health/National and
Stroke
Institute of
(NIH/NINDS).
children with new onset epilepsy. Dev Med Child Neurol 2015; 57: 37–44.
and family stress factors predict health-related quality in
(2013) 2014 NINDS benchmarks for epilepsy research.
4. Austin JK, Perkins SM, Johnson CS, et al. Behavior prob-
Available from: http://www.ninds.nih.gov/research/epilepsy
lems in children at time of first recognized seizure and
web/2014benchmarks.htm (accessed 23 April 2014).
changes over the following 3 years. Epilepsy Behav 2011;
2. Rantanen K, Eriksson K, Nieminen P. Social competence in children with epilepsy – a review. Epilepsy Behav 2012; 24: 295–303. 3. Zhao Q, Rathouz PJ, Jones JE, et al. Longitudinal trajectories of behavior problems and social competence in
6. Wu Y, Follansbee-Junger K, Rausch J, Modi A. Parent
21: 373–81.
pediatric patients with new-onset epilepsy. Epilepsia 2014; 55: 866–77. 7. Moore MH, Mah JK, Trute B. Family-centred care and health-related quality of life of patients in paediatric neu-
5. Hamiwka LD, Hamiwka LA, Sherman EMS, et al. Social
rosciences. Child Care Health Dev 2009; 35: 454–61.
skills in children with epilepsy: how do they compare to healthy and chronic disease controls? Epilepsy Behav 2011; 21: 238–41.
Challenges in using hospital billing databases for epidemiology BERNARD DAN H^opital Universitaire des Enfants Reine Fabiola, Universite Libre de Bruxelles, Brussels, Belgium. doi: 10.1111/dmcn.12568 This commentary is on the original article by Wagner et al. on pages 45–52 of this issue.
Hospitals increasingly organize systematic recording of their activities in terms of clinical diagnosis, procedures, complications, or comorbidities; items, among others, that could lend themselves to analysis. Resulting databases have been used primarily as financing tools. They enable hospitals to monitor the utilization of resources and quality of service by relating patients’ characteristics to the costs involved in their care. It is tempting to use such databases for health surveillance purposes. More particularly, they seem to have immediate appeal for clarifying the epidemiology of specific health problems, for which there is a lack of population survey data. For example, data on migraine or epilepsy in childhood are currently scarce compared to other chronic conditions that have a similar impact on public health.1 The available information is also generally of too limited an accuracy to effectively promote better practice in order to ameliorate outcomes, mostly because of insufficient standardization in data collection and problems with ascertainment. For want of adequate surveillance data, researchers and policymakers have been suggested to be ‘flying blind’2 in their efforts to inform and improve public health practice. Wagner et al.3 in their article focus on the neurodevelopmental and psychiatric comorbidity of epilepsy and migraine in children. In these conditions, the burden of comorbidities is often regarded as outweighing that of the primary condition.4 Surveillance of these comorbidities may therefore prove particularly important for designing
appropriate intervention strategies. The authors approached this topic by analyzing coded diagnoses based on a selection of categories from the International Classification of Disease Ninth Revision, Clinical Modification (ICD-9-CM) recorded through a hospital billing system. Datasets derived from such billing data have been used in a similar way in other public health surveillance systems in South Carolina and elsewhere. The use of disorder-specific codes for case ascertainment has been shown to be more cost effective than actually reviewing medical records or interviewing each individual in the study population.5 Yet, it must be borne in mind that this coding process was originally designed for optimizing billing, which may influence the estimation of comorbid conditions. More generally, using classification system codes for surveillance purposes remains difficult. The ICD-9-CM has limited specificity with regard to the aetiology of epilepsy, and this limits accuracy in addressing risk factors and analyzing outcomes by cause. Coding also blurs much of the refinement required for clinically relevant characterization of epilepsy, migraine, and comorbidity, whereas this is critical for epidemiological studies. Categorical constructs may be illadapted to the paediatric context, for example ‘alcohol misuse’, ‘alcoholism’, and ‘alcohol abuse’ may entertain some confusion and make interpretation difficult. Diagnostic accuracy and case ascertainment also depend on other factors, such as the limitations of the source of the data, and they are difficult to validate. Particularly in recording for billing purposes, coding practices are expected to vary widely between the different people providing data, at least in terms of level of detail and precision, and this may potentially lead to under- or over-diagnosis.5 The issue of the clinical basis on which coding is performed is especially sensitive as, for example, most of the psychiatric diagnoses are difficult to make and require specialized expertise. Moreover, the question of the representativeness of the studied population remains unsolved as it is difficult to
Commentaries 7
