The highest level of comprehensive care targets youths with epilepsy who have known comorbid psychiatric, developmental, and cognitive disorders and/or a history of nonadherence to seizure medication.
Table. Free behavioral health screening tools for pediatric epilepsy
Figure. Three-tiered approach to behavioral health screening
Dr Wagner is Research Associate Professor and Pediatric Psychologist, Medical University of South Carolina, College of Nursing, Charleston, SC; Dr Weyand is Pediatric Psychologist, Akron Children’s Hospital, Neurodevelopmental Science Center, Akron, OH.
Behavioral health care is the practice of integrating the care of mental health and substance abuse disorders, health behaviors and their contribution to chronic medical illnesses, life stressors and crises, stress-related physical symptoms, and ineffective patterns of health care utilization, into comprehensive health care.
Up to 50% of youths with epilepsy experience developmental (eg, autism, ADHD), psychiatric (depression, anxiety), and/or neurocognitive comorbidities.1-3 Furthermore, 20% of youths with epilepsy report suicidal ideation; although youths with epilepsy who experience suicidal ideation do not necessarily have clinical depression.4 Even in youth without comorbid clinical diagnoses, epilepsy can impact daily functioning such as social difficulties, worries about seizures, activity level, stigma, and treatment nonadherence. In fact, both youths and parents find these mental health symptoms and challenges to be more bothersome and having a more robust impact on quality of life (QOL) than seizures.5
Comprehensive epilepsy care
Overlap between behavioral health symptoms and common epilepsy-specific factors (ie, adverse effects of antiepileptic drugs, seizure semiology), can create diagnostic challenges for epilepsy health care providers. However, providers must face these challenges and provide comprehensive epilepsy care that integrates behavioral health into routine epilepsy care. New quality indicators approved by the American Academy of Neurology recommend routine assessment of psychosocial functioning at each epilepsy encounter for the delivery of optimal care and better outcomes for persons with epilepsy.6
Comprehensive epilepsy care integrates behavioral health and encourages enhanced self/family management of epilepsy and its comorbidities. One of the challenges to providing comprehensive epilepsy care is lack of availability or integration of mental health resources. Although studies have shown the benefits of integrating behavioral health care into routine epilepsy visits, not all epilepsy clinics have a pediatric psychologist or other behavioral health provider on staff.7-9
Behavioral health screening
Recommended behavior health screening includes a brief assessment of anxiety, depression, suicidal ideation, ADHD, and self/family management of epilepsy. Self/family management can encompass seizure control, behaviors or steps taken to prevent or cope with the consequences of epilepsy and its comorbidities in the context of daily life, the complex roles and behaviors of caregivers, promotion to increasingly independent self-management, navigation of social, health, and community systems, and partnering with the youth’s educational team.10
Behavioral health screening should not be avoided because of its potentially overwhelming nature or lack of resources. It can be incorporated into epilepsy care by using a 3-tiered health promotion approach (Figure).11 Initially, you can begin by screening for cognitive and behavioral concerns in all youth and asking patients and families about their self-management awareness and needs.
The Table provides a list of validated, free, and easy to score screening tools for emotional/behavioral/self-management concerns. If there are mild concerns and the family has readily accessible support and resources, a community-based referral (eg, local epilepsy foundation or advocacy group) or broad epilepsy self-management resources may be sufficient (My Seizure Diary, Seizure First Aid App; Epilepsy Toolbox).
Youths at increased risk, such as those with treatment-resistant epilepsy, psychiatric (anxiety, depression), developmental (attention), or cognitive (eg, cognitive or memory impairments) symptoms, and children with adherence or other self-management difficulties are of special concern. At this level, screening for particular problems is necessary (eg, focus on depression screening if depressive symptoms are indicated).
Referral to a behavioral health professional (eg, pediatric psychologist, neuropsychologist, psychiatrist, social worker, licensed counselor) for further evaluation and/or treatment will likely be necessary. Evidence-based behavioral health interventions to treat specific problems should be considered (eg, adherence, coping skills, depressive symptoms). Pharmacological interventions for specific disorders (eg, anxiety, depression, ADHD) should also be considered.
The highest level of care targets youths with epilepsy who have known comorbid psychiatric, developmental, and cognitive disorders and/or a history of nonadherence to seizure medication. It is important to inquire about current symptom severity, challenges with self-management, and current level of mental health support, for example, is the youth receiving mental health services or educational supports? If not, referral for indicated services is warranted.
When integrating this approach into routine epilepsy care, several factors need to be kept in mind: the immediacy of the epilepsy diagnosis, the level of comfort of the youth and family in managing epilepsy and its treatments, and the youth’s age and developmental level. The needs of youths with epilepsy and caregivers at or immediately following diagnosis may be very different than those with chronic epilepsy. More than half of the youths who receive a diagnosis of epilepsy have some degree of difficulty following the prescribed treatment plan in the first few months of treatment.9 Moreover, parents and children continue to have worries and needs years after the diagnosis of epilepsy. Therefore, behavioral health screening, referral, and possible intervention are salient at or near diagnosis as well as throughout the course of epilepsy care.
It is also important to consider the developmental level of the youth and how involved in his or her own care and epilepsy management the young patient can be. There is no “ideal” age for introducing independence into epilepsy self-care, and research in other pediatric chronic illnesses has found that there is variability depending on a youth’s level of understanding and responsibility.12 Therefore, it is up to the discretion of the health care team and the youth’s family; however, youths should be involved in their epilepsy management as early as possible.
Independence with epilepsy management will assist with readiness to transition to adult care. Notably, there are a significant number of youths with epilepsy who will not be able to self-manage their epilepsy and will continue to require primary epilepsy management from their caregivers across their lifespan. The epilepsy health care professional needs to engage and support these caregivers, especially during transition to adult epilepsy care.
Comprehensive epilepsy care is not only identified as best practice, but integration of behavioral health care may also reduce health care costs, improve quality of life, increase patient satisfaction, and reduce antiepileptic drug adverse effects.7-13 The inclusion of a behavioral health provider on an epilepsy team assists with seamless transition to necessary behavioral health services. However, if behavioral health providers are not available, the epilepsy health care professional is encouraged to follow a three-tiered stepped-up care approach to screen for and address behavioral health symptoms and needs of youths who have epilepsy.
1. Wagner J, Wilson D, Smith G, et al. Neurodevelopmental and mental health comorbidities in children and adolescents with epilepsy and migraine: a response to identified research gaps. Dev Med Child Neurol. 2015;57:45-52.
2. Russ S, Larson K, Halfon N. A national profile of childhood epilepsy and seizure disorders. Pediatrics. 2012;129:256-264.
3. Jensen F. Epilepsy as a spectrum disorder: implications for clinical and basic neuroscience. Epilepsia. 2011;52:1-6.
4. Jones J, Siddarth P, Gurbani S, Shields W, Caplan R. Screening for suicidal ideation in children with epilepsy. Epilepsy Behav. 2013;29:521-526.
5. Baca C, Vickrey B, Caplan R, et al. Psychiatric and medical comorbidity and quality of life outcomes in childhood-onset epilepsy. Pediatrics. 2011;128:e1532-31543.
6. Fountain N, Van Ness P, Bennett A, et al. Quality improvement in neurology: Epileps update quality measurement set. Neurology. 2015;84:1483-1487.
7. Guilfoyle S, Follansbee-Junger K, Modi A. Development and preliminary implementation of a psychosocial service into standard medical care for pediatric epilepsy. Clin Pract Pediatr Psychol. 2013;1:276-288.
8. Guilfoyle S, Monahan S, Wesolowski C, Modi A. Depression screening in pediatric epilepsy: evidence for the benefit of a behavioral medicine service in early detection. Epilepsy Behav. 2015;44:5-10.
9. Guilfoyle S, Wagner J, Modi A, et al. Pediatric epilepsy and behavioral health: the state of the literature and directions for evidence-based interprofessional care, training, and research. Clin Pract Pediatr Psychol. 2017;5:79-90.
10. Wagner J, Modi A, Johnson EA, et al. Self-management interventions in pediatric epilepsy: What is the level of evidence? Epilepsia. 2017;57:743-754.
12. Wysocki T, Harris MA, Wilkinson K, et al. Self-management competence as a predictor of outcomes of intensive therapy or usual care in youth with type 1 diabetes. Diabetes Care. 2003;26:2043-2047.
13. Ryan J, McGrady M. Guilfoyle S, et al. Quality of life changes and health care charges among youth with epilepsy. J Pediatr Psychol. 2016;41:888-897.
14. Modi A, Junger K, Mara C, et al. Validation of the PedsQL Epilepsy Module: a pediatric epilepsy-specific quality of life measure. Epilepsia. 2017.
15. Lai J, Nowinski C, Zelco F, et al. Validation of the NeuroQoL measurement system in children with epilepsy. Epilepsy Behav. 2015;46:209-214.
16. Ferro M, Goodwin S, Sabaz M. Measurement equivalence of the newly developed Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55). Epilepsia. 2016;57:427-435.
17. Shore C, Buelow J, Austin J, Johnson C. Continuing psychosocial care needs in children with new-onset epilepsy and their parents. J Neurosci Nurs. 2009;41:244-250.
18. Modi AC, Monahan S, Daniels D, Glauser TA. Development and Validation of the Pediatric Epilepsy Medication Self-Management Questionnaire. Epilepsy Behav. 2010;18:94-99.
19. Ryan J, Arnett A, Pai A, Modi A. An examination of the Allocation of Treatment Responsibility scale in adolescents with epilepsy. Epilepsy Behav. 2014;41:1-5.
20. Austin JK, Shore CP, Dunn DW, et al. Development of a parent response to child illness (PRCI) scale. Epilepsy Behav. 2008;13:662-669.
21. Caplin D, Austin JK, Dunn DW, et al. Development of a self-efficacy scale for children and adolescents with epilepsy. Child Health Care. 2002;31:295-309.
22. Junger K, Morita D, Modi A. The Pediatric Epilepsy Side Effects Questionnaire: establishing clinically meaningful change. Epilepsy Behav. 2015;45:101-104.
23. Wagner J, Kellermann T, Mueller M, et al. Development and validation of the NDDI-E-Y: a depression screening tool for pediatric epilepsy. Epilepsia. 2016;57:1265-1270.