Background. The proportion of US children with special health care needs (CSHCN) with epilepsy/seizure disorder who receive care in high-quality health service systems was examined. Methodology. We analyzed data for 40,242 CSHCN from the 2009-2010 National Survey of CSHCN and compared CSHCN with epilepsy/seizure disorder to CSHCN without epilepsy/seizure disorder. Measures included attainment rates for 6 federal quality indicators with comparisons conducted using chi square and logistic regression methods. In addition, CSHCN with epilepsy/seizure disorder were compared to CSHCN without epilepsy/seizure disorder on the basis of 14 unmet health care needs. Results. Lower attainment rates for receiving comprehensive care in a medical home and easily accessible community-based services were found for CSHCN with epilepsy/seizure disorder versus CSHCN without epilepsy/seizure disorder (medical home: 32% versus 43%; accessible community-based services: 50% versus 66%, resp.) in unadjusted analyses. Lower adjusted odds for these indicators as well as greater unmet need for specialists, dentistry, prescriptions, therapies, and mental health care were also found for CSHCN with epilepsy/seizure disorder. Conclusions. Further efforts are needed to improve attainment of high-quality health care services for CSHCN with epilepsy/seizure disorders. 1. Introduction Childhood seizures are often accompanied by cognitive and behavioral deficits which may be induced or exacerbated by the seizure disorder and vary based on underlying neuropathology (e.g., perinatal brain injury and congenital central nervous system malformation), seizure type, age of onset, psychosocial problems, and treatment side effects [1]. Recent research has increased our understanding of the range of difficulties accompanying a diagnosis of childhood epilepsy/seizure disorder. Children with currently reported epilepsy/seizure disorder were significantly more likely than those never diagnosed to experience depression, anxiety, attention deficit/hyperactivity disorder, conduct problems, learning disability, developmental delay, and autism/autism spectrum disorder [2]. They had greater risk of experiencing a range of physical health comorbidities including hearing or vision problems, asthma, headaches, allergies, ear infections, and poor oral health. Functionally, children with current epilepsy/seizure disorder were more likely to have limited activity, grade repetition, school problems, and low social competence compared with children never diagnosed. High levels of parent aggravation were also
References
[1]
Merck Manual of Medical Information, Simon & Schuster, New York, NY, USA, 2nd edition, 2003.
[2]
S. A. Russ, K. Larson, and N. Halfon, “A national profile of childhood epilepsy and seizure disorder,” Pediatrics, vol. 129, no. 2, pp. 256–264, 2012.
[3]
P. Perucca and F. G. Gilliam, “Adverse effects of antiepileptic drugs,” The Lancet Neurology, vol. 11, no. 9, pp. 792–802, 2012.
[4]
R. A. Seymour, J. M. Thomason, and J. S. Ellis, “The pathogenesis of drug-induced gingival overgrowth,” Journal of Clinical Periodontology, vol. 23, no. 3, pp. 165–175, 1996.
[5]
National Research Council, Epilepsy Across the Spectrum: Promoting Health and Understanding, The National Academies Press, Washington, DC, USA, 2012.
[6]
C. E. Begley, R. Basu, D. Lairson et al., “Socioeconomic status, health care use, and outcomes: persistence of disparities over time,” Epilepsia, vol. 52, no. 5, pp. 957–964, 2011.
[7]
F. Farhidvash, P. Singh, B. Abou-Khalil, and A. Arain, “Patients visiting the emergency room for seizures: insurance status and clinic follow-up,” Seizure, vol. 18, no. 9, pp. 644–647, 2009.
[8]
M. T. Halpern, J. M. Renaud, and B. G. Vickrey, “Impact of insurance status on access to care and out-of-pocket costs for U.S. individuals with epilepsy,” Epilepsy and Behavior, vol. 22, no. 3, pp. 483–489, 2011.
[9]
J. Bisgaier and K. V. Rhodes, “Auditing access to specialty care for children with public insurance,” The New England Journal of Medicine, vol. 364, no. 24, pp. 2324–2333, 2011.
[10]
D. Polsky, J. Weiner, J. F. Bale Jr., S. Ashwal, and M. J. Painter, “Specialty care by child neurologists: a workforce analysis,” Neurology, vol. 64, no. 6, pp. 942–948, 2005.
[11]
B. B. Strickland, P. C. van Dyck, M. D. Kogan et al., “Assessing and ensuring a comprehensive system of services for children with special health care needs: a public health approach,” American Journal of Public Health, vol. 101, no. 2, pp. 224–231, 2011.
[12]
M. McPherson, P. Arango, H. Fox et al., “A new definition of children with special health care needs,” Pediatrics, vol. 102, no. 1, pp. 137–140, 1998.
[13]
S. J. Blumberg, E. M. Welch, S. R. Chowdhury, H. L. Upchurch, E. K. Parker, and B. J. Skalland, “Design and operation of the National Survey of Children with Special Health Care Needs, 2005-2006,” Vital and Health Statistics, no. 45, pp. 1–188, 2008.
[14]
C. D. Bethell, D. Read, R. E. Stein, S. J. Blumberg, N. Wells, and P. W. Newacheck, “Identifying children with special health care needs: development and evaluation of a short screening instrument,” Ambulatory Pediatrics, vol. 2, no. 1, pp. 38–48, 2002.
[15]
L. D. Cowan, “The epidemiology of epilepsies in children,” Mental Retardation and Developmental Disabilities Research Reviews, vol. 8, no. 3, pp. 171–181, 2002.
[16]
S. L. Toomey, A. T. Chien, M. N. Elliott, J. Ratner, and M. A. Schuster, “Disparities in unmet need for care coordination: The National Survey of Children's Health,” Pediatrics, vol. 131, no. 2, pp. 217–224, 2013.
[17]
J. K. Austin and R. Caplan, “Behavioral and psychiatric comorbidities in pediatric epilepsy: toward an integrative model,” Epilepsia, vol. 48, no. 9, pp. 1639–1651, 2007.
[18]
J. M. Buelow, A. McNelis, C. P. Shore, and J. K. Austin, “Stressors of parents of children with epilepsy and intellectual disability,” The Journal of Neuroscience Nursing, vol. 38, no. 3, pp. 147–176, 2006.
[19]
R. C. Antonelli, J. W. McAllister, and J. Popp, “Making care coordination a critical component of the pediatric health system: a multidisciplinary framework,” The Commonwealth Fund, vol. 110, 2009, http://www.commonwealthfund.org/Publications/Fund-Reports/2009/May/Making-Care-Coordination-a-Critical-Component-of-the-Pediatric-Health-System.aspx#citation.
[20]
National Quality Forum, Quality Connections: Care Coordination, NQF, Washington, DC, USA, 2010.
