Publications by authors named "Marisa S Prelack"

4 Publications

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Design and implementation of electronic health record common data elements for pediatric epilepsy: Foundations for a learning health care system.

Epilepsia 2021 01 24;62(1):198-216. Epub 2020 Dec 24.

Department of Neurology, St Joseph's Hospital and Medical Center, Phoenix, AZ, USA.

Objective: Common data elements (CDEs) are standardized questions and answer choices that allow aggregation, analysis, and comparison of observations from multiple sources. Clinical CDEs are foundational for learning health care systems, a data-driven approach to health care focused on continuous improvement of outcomes. We aimed to create clinical CDEs for pediatric epilepsy.

Methods: A multiple stakeholder group (clinicians, researchers, parents, caregivers, advocates, and electronic health record [EHR] vendors) developed clinical CDEs for routine care of children with epilepsy. Initial drafts drew from clinical epilepsy note templates, CDEs created for clinical research, items in existing registries, consensus documents and guidelines, quality metrics, and outcomes needed for demonstration projects. The CDEs were refined through discussion and field testing. We describe the development process, rationale for CDE selection, findings from piloting, and the CDEs themselves. We also describe early implementation, including experience with EHR systems and compatibility with the International League Against Epilepsy classification of seizure types.

Results: Common data elements were drafted in August 2017 and finalized in January 2020. Prioritized outcomes included seizure control, seizure freedom, American Academy of Neurology quality measures, presence of common comorbidities, and quality of life. The CDEs were piloted at 224 visits at 10 centers. The final CDEs included 36 questions in nine sections (number of questions): diagnosis (1), seizure frequency (9), quality of life (2), epilepsy history (6), etiology (8), comorbidities (2), treatment (2), process measures (5), and longitudinal history notes (1). Seizures are categorized as generalized tonic-clonic (regardless of onset), motor, nonmotor, and epileptic spasms. Focality is collected as epilepsy type rather than seizure type. Seizure frequency is measured in nine levels (all used during piloting). The CDEs were implemented in three vendor systems. Early clinical adoption included 1294 encounters at one center.

Significance: We created, piloted, refined, finalized, and implemented a novel set of clinical CDEs for pediatric epilepsy.
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http://dx.doi.org/10.1111/epi.16733DOI Listing
January 2021

Analyzing 2,589 child neurology telehealth encounters necessitated by the COVID-19 pandemic.

Neurology 2020 09 9;95(9):e1257-e1266. Epub 2020 Jun 9.

From the Division of Neurology (S.C.R., S.E.F., A.K.G., J.X., P.D.G., M.K., M.S.P., U.S., M.P.F., S.E.M., M.P.M., S.K.K., D.J.S.., B.L.B., N.S.A., I.H.), Department of Biomedical and Health Informatics (A.K.G., J.X., P.D.G., M.K., I.H.), and The Epilepsy NeuroGenetics Initiative (A.K.G., J.X., P.D.G., M.K., M.P.F., S.K.K., N.S.A., I.H.), Children's Hospital of Philadelphia; and Departments of Neurology and Pediatrics (S.C.R., S.E.F., M.S.P., M.P.F., S.K.K., N.S.A., I.H.), Department of Biostatistics, Epidemiology and Informatics (N.S.A.), and Department of Anesthesia & Critical Care (N.S.A.), University of Pennsylvania Perelman School of Medicine, Philadelphia.

Objective: To assess the rapid implementation of child neurology telehealth outpatient care with the onset of the coronavirus disease 2019 (COVID-19) pandemic in March 2020.

Methods: This was a cohort study with retrospective comparison of 14,780 in-person encounters and 2,589 telehealth encounters, including 2,093 audio-video telemedicine and 496 scheduled telephone encounters, between October 1, 2019 and April 24, 2020. We compared in-person and telehealth encounters for patient demographics and diagnoses. For audio-video telemedicine encounters, we analyzed questionnaire responses addressing provider experience, follow-up plans, technical quality, need for in-person assessment, and parent/caregiver satisfaction. We performed manual reviews of encounters flagged as concerning by providers.

Results: There were no differences in patient age and major ICD-10 codes before and after transition. Clinicians considered telemedicine satisfactory in 93% (1,200 of 1,286) of encounters and suggested telemedicine as a component for follow-up care in 89% (1,144 of 1,286) of encounters. Technical challenges were reported in 40% (519 of 1,314) of encounters. In-person assessment was considered warranted after 5% (65 of 1,285) of encounters. Patients/caregivers indicated interest in telemedicine for future care in 86% (187 of 217) of encounters. Participation in telemedicine encounters compared to telephone encounters was less frequent among patients in racial or ethnic minority groups.

Conclusions: We effectively converted most of our outpatient care to telehealth encounters, including mostly audio-video telemedicine encounters. Providers rated the vast majority of telemedicine encounters to be satisfactory, and only a small proportion of encounters required short-term in-person follow-up. These findings suggest that telemedicine is feasible and effective for a large proportion of child neurology care. Additional strategies are needed to ensure equitable telemedicine use.
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http://dx.doi.org/10.1212/WNL.0000000000010010DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7538222PMC
September 2020

19-Year-Old Male with Headaches and a Possible Seizure.

Brain Pathol 2017 07;27(4):557-558

Department of Pathology and Laboratory Medicine, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania.

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http://dx.doi.org/10.1111/bpa.12529DOI Listing
July 2017

Varicella zoster virus rhombencephalomyelitis following radiation therapy for oropharyngeal carcinoma.

J Clin Neurosci 2016 Mar 23;25:164-6. Epub 2015 Oct 23.

Department of Neurology, Perelman School of Medicine, 3400 Spruce Street, 3W Gates, University of Pennsylvania, Philadelphia, PA 19104, USA.

We report a 64-year-old man with a history of stage IV oropharyngeal squamous cell carcinoma treated with cisplatin and cetuximab followed by radiation therapy who developed a rapidly advancing rhombencephalomyelitis 11 months after the completion of radiation to the base of his tongue. His initial symptoms were left ear paresthesias, dysphagia, and progressive descending weakness. Routine cerebrospinal fluid (CSF) analysis was unremarkable. Initial MRI of the brain and cervical spinal cord revealed a demarcated symmetrical heterogeneously enhancing intramedullary lesion involving the cervicomedullary spinal cord. Progressive neurological worsening included increasing weakness of his limbs, facial weakness and ocular motility disorders and MRI revealed that the lesion was advancing into his pons and cervical spinal cord. Empiric treatment for radiation myelitis was initiated. Although CSF polymerase chain reaction was negative for varicella zoster virus (VZV), antibody studies revealed intrathecal synthesis of antibody to VZV and treatment for VZV was started as well. Improvement was slow and incomplete with subsequent worsening resulting in death in 5.5 weeks. The diagnosis of rhombencephalitis and myelitis following radiation therapy may be exquisitely challenging. The possibility of VZV, a treatable disorder, should be included in the differential diagnosis.
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http://dx.doi.org/10.1016/j.jocn.2015.09.009DOI Listing
March 2016