Pediatric Neuroscience Pathways Fall 2012 - Cleveland Clinic

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Project COPE – Improving Knowledge and Access to Care for Youth with Epilepsy in Ohio Tatiana Falcone, MD youth with epilepsy have increased mental health needs compared with the general population. we hypothesized that children with epilepsy will have barriers to accessing mental health care and an increased need for educational services. to further understand the needs of youth with epilepsy in Ohio, a needs assessment survey was conducted. A parent survey was administered to 359 families with children up to the age of 18 who were diagnosed with epilepsy. surveys also were distributed to epileptologists, school nurses, pediatricians and other key informants. The findings about epilepsy and mental health included: • Access to educational services is a major barrier for youth with epilepsy. • Parents lacked knowledge about the existing educational services available to their children. • Information about the resources available to these patients was poorly disseminated. • Ninety-eight percent of families felt empowered and involved in the decision-making for epilepsy and mental health services. seventy percent of families and patients felt they had very little knowledge about epilepsy. • Most concerns were related to quality of life, poor seizure control and psychiatric comorbidities. • Contrary to our belief, most families (76 percent) felt it was easy to access epilepsy services. the wait time for an epilepsy appointment was less than one week for 72 percent of the families. Nearly all (96 percent) of the families had a PCP, and 58 percent reported receiving care from their PcP at least one time a year. Almost 92.6 percent reported receiving care from their PcP at least two times a year. • Most patients in our survey (76 percent) have to travel two hours or less to see their specialist (e.g., epileptologist, child psychiatrist). Only five families in our sample had to travel more than 10 hours for care. Pediatric ePilePsy the primary goal of Project coPe (collaboration for outreach and Prevention education) is to improve access and knowledge about mental healthcare for children and adolescents with epilepsy by facilitating development of a community-based, culturally and linguistically competent mental health model. The project’s objectives are to create a culturally and linguistically competent network of care that enhances the capacity of primary care providers (PCPs), pediatric neurologists and pediatric epileptologists to detect, refer and/or treat mental health problems in youth with epilepsy; to create an effective triage network to improve access to mental healthcare for youth with epilepsy; and to educate and assist families in accessing mental health services for their children with epilepsy. • Seventy percent of our patients felt that they had very poor knowledge about epilepsy and felt sad, frustrated and overwhelmed when they learned about the diagnosis. • Seventy-three percent of the families felt that they were given information about epilepsy and psychiatric comorbidities mostly by the specialist (e.g., pediatric epileptologist, child psychiatrist). • Pediatricians in the Cleveland community felt that epileptologists provided most of the epilepsy care and that child psychiatrists provided most of the mental healthcare for youth with epilepsy. • Overwhelmingly, all PCPs in our sample felt the allotted time for appointments makes it difficult to support and guide the medical home model. • Pediatricians providing hospital-based services felt closer to the medical home model because they had access to case management and specialists readily available during admission and after discharge to help coordinate care for youth with epilepsy. • Epileptologists, child psychiatrists and PCPs identified reimbursement as a barrier for epilepsy and mental healthcare for youth with epilepsy for as many as 75 percent of their patients. Additional survey findings are detailed in Figures 1 to 3. Psychoeducation is one of the underrecognized unmet needs of children. Therefore, it is important to engage pediatricians in it. stigma continues to be an important barrier for families and youth with epilepsy. Educating first responders will help us decrease stigma and improve access to mental health services for youth with epilepsy. the access issue in youth with special healthcare Needs In Ohio, it is estimated that there are 32,159 youths with epilepsy. the number of children with special healthcare needs (cshcN) is 570,913. The federal government has estimated that around 227,000 of these youths are uninsured. CSHCN are a vulnerable population, according to the Ohio Family 10 Pediatric NeuroscieNce Pathways | 2012 – 2013
Health Survey. CSHCN have greater difficulty accessing the appropriate level of mental health services. Overall, these patients have higher unmet needs than does the general population. about 6.2 percent of these patients who are eligible for medicaid services continue to be uninsured, perpetuating the unmet medical and psychiatric needs. Pediatric ePilePsy conclusions there are important and underrecognized unmet needs in youth with epilepsy. Psychoeducation is a key piece to help families of youth with epilepsy cope with some of the comorbidities these patients face. Although many services are provided in our community, parents and children do not know about these services and do not access them. it is important to engage PcPs in the psychoeducation of youth with epilepsy. stigma continues to be an important barrier for patients and families in accessing mental health services. Educating first responders (school nurses, parents, pediatricians) will help us decrease stigma and improve access to mental health services by youth with epilepsy. this project was developed with funding from the health resources services administration maternal and child health Bureau under grant H98MC2026n. suggested readiNg Plioplys S, Dunn DW, Caplan R. 10-year research update review: Psychiatric problems in children with epilepsy. J Am Acad Child Adolesc Psychiatry. 2007;46:1389-1402. Caplan R, Gillberg C, Dunn DW, Spence SJ. Psychiatric disorders in children with epilepsy. In: Engel J, Pedley TA, eds. Epilepsy: A Comprehensive Textbook. Philadelphia, PA: Lippincott Williams & Wilkins; 2008:2179-2193. Russ S, Larson K, Halfon N. A national profile of childhood epilepsy and seizure disorder. Pediatrics. 2012;129:256-263. Tatiana Falcone, MD, is a staff physician in Cleveland Clinic’s Neurological Institute who focuses on child and adolescent psychiatry. Her specialty interests include anxiety and mood disorders, consultation-liaison psychiatry, emergency psychiatry, psycho-oncology, psychosis, schizophrenia, epilepsy and psychiatric issues in epilepsy. She can be contacted at 216.444.7459 or falcont1@ccf.org. figure 1. survey of 50 school nurses in Northeast ohio: what percentage of students in your school have a seizure action plan? ■ 76-100% ■ 51-75% ■ 26-50% ■ 11-25% ■ 2-10% ■ 1% or less Percentages shown on the pie chart indicate percent providing that response, e.g., 53 percent responded that 76-100% of their students had a plan. figure 2. surveys of 13 pediatricians in Northeast ohio: does your practice provide patient education about self- management and medication transition for youth with epilepsy and their parents? ■ always ■ usually ■ rarely ■ Never ■ No response figure 3. survey of eight professionals in epilepsy care: Epileptologists identified the comorbidities as follows: visit clevelaNdcliNicchildreNs.org | 866.588.2264 11 100 80 60 40 20 0 53.3% 50% 8.3% 20% 16.7% 16.7% 8.3% 6.7% 6.7% 6.7% 6.7% ADHD Behavior problems Learning problems Cognitive problems Mood issues
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Page 3 and 4: Welcome from the Editors cleveland
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Page 7 and 8: cover story | diagNostic radiology
Page 9 and 10: suggested readiNg Wyllie E, Lachhwa
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Pediatric Neuroscience Pathways Fall 2012 - Cleveland Clinic

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