title: Delivery of epilepsy care to adults with intellectual and developmental disabilities.
abstract: Epilepsy is common in people with intellectual and developmental disabilities (IDD). In adulthood, patients with IDD and epilepsy (IDD-E) have neurologic, psychiatric, medical, and social challenges compounded by fragmented and limited care. With increasing neurologic disability, there is a higher frequency of epilepsy, especially symptomatic generalized and treatment-resistant epilepsies. The causes of IDD-E are increasingly recognized to be genetic based on chromosomal microarray analysis to identify copy number variants, gene panels (epilepsy, autism spectrum disorder, intellectual disability), and whole-exome sequencing. A specific genetic diagnosis may guide care by pointing to comorbid disorders and best therapy. Therapy to control seizures should be individualized, with drug selection based on seizure types, epilepsy syndrome, concomitant medications, and comorbid disorders. There are limited comparative antiepileptic drug data in the IDD-E population. Vagus nerve and responsive neural stimulation therapies and resective surgery should be considered. Among the many comorbid disorders that affect patients with IDD-E, psychiatric and sleep disorders are common but often unrecognized and typically not treated. Transition from holistic and coordinated pediatric to adult care is often a vulnerable period. Communication among adult health care providers is complex but essential to ensure best care when these patients are seen in outpatient, emergency room, and inpatient settings. We propose specific recommendations for minimum care standards for people with IDD-E.
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN. od4@nyu.edu.
authors.forename: Orrin
authors.initials: O
authors.lastname: Devinsky
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN.
authors.forename: Miya
authors.initials: M
authors.lastname: Asato
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN.
authors.forename: Peter
authors.initials: P
authors.lastname: Camfield
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN.
authors.forename: Eric
authors.initials: E
authors.lastname: Geller
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN.
authors.forename: Andres M
authors.initials: AM
authors.lastname: Kanner
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN.
authors.forename: Seth
authors.initials: S
authors.lastname: Keller
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN.
authors.forename: Michael
authors.initials: M
authors.lastname: Kerr
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN.
authors.forename: Eric H
authors.initials: EH
authors.lastname: Kossoff
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN.
authors.forename: Heather
authors.initials: H
authors.lastname: Lau
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN.
authors.forename: Sanjeev
authors.initials: S
authors.lastname: Kothare
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN.
authors.forename: Baldev K
authors.initials: BK
authors.lastname: Singh
authors.affiliation: From New York University School of Medicine (O.D., H.L., S.K.), New York; Children's Hospital of Pittsburgh of UPMC (M.A.), PA; IWK Heath Centre and Dalhousie University (P.C.), Halifax, Canada; Saint Barnabas Medical Center (E.G.), Livingston, NJ; University of Miami Miller School of Medicine (A.M.K.), FL; Advocare Neurology of South Jersey (S.K.), Lumberton, NJ; Welsh Centre for Learning Disabilities (M.K.), Cardiff University, Cathays, Cardiff, UK; Johns Hopkins Hospital (E.H.K.), Baltimore, MD; New York Medical College (B.K.S.), New York; and Mayo Clinic Hospital (E.W.), Rochester, MN.
authors.forename: Elaine
authors.initials: E
authors.lastname: Wirrell
mesh_terms: D000328:Adult; D000927:Anticonvulsants / Q000627:therapeutic use*; D003266:Continuity of Patient Care; D002658:Developmental Disabilities / Q000150:complications*; D000069279:Drug Resistant Epilepsy / Q000150:complications / Q000628:therapy; D004827:Epilepsy / Q000150:complications / Q000628:therapy*; D006801:Humans; D008607:Intellectual Disability / Q000150:complications*; D019635:Neurosurgical Procedures; D060305:Transition to Adult Care / Q000458:organization & administration; D055536:Vagus Nerve Stimulation
chemical_list: D000927:Anticonvulsants