Creation and implementation of an electronic health record note for quality improvement in pediatric epilepsy: Practical considerations and lessons learned.

OBJECTIVE: To describe the development of the Pediatric Epilepsy Outcome-Informatics Project (PEOIP) at Alberta Children's Hospital (ACH), which was created to provide standardized, point-of-care data entry; near-time data analysis; and availability of outcome dashboards as a baseline on which to pursue quality improvement. METHODS: Stakeholders involved in the PEOIP met weekly to determine the most important outcomes for patients diagnosed with epilepsy, create a standardized electronic note with defined fields (patient demographics, seizure and syndrome type and frequency and specific outcomes- seizure type and frequency, adverse effects, emergency department visits, hospitalization, and care pathways for clinical decision support. These were embedded in the electronic health record from which the fields were extracted into a data display platform that provided patient- and population-level dashboards updated every 36 hours. Provider satisfaction and family experience surveys were performed to assess the impact of the standardized electronic note. RESULTS: In the last 5 years, 3,245 unique patients involving 13, 831 encounters had prospective, longitudinal, standardized epilepsy data accrued via point-of-care data entry into an electronic note as part of routine clinical care. A provider satisfaction survey of the small number of users involved indicated that the vast majority believed that the note makes documentation more efficient. A family experience survey indicated that being provided with the note was considered "valuable" or "really valuable" by 86% of respondents and facilitated communication with family members, school, and advocacy organizations. SIGNIFICANCE: The PEOIP serves as a proof of principle that information obtained as part of routine clinical care can be collected in a prospective, standardized, efficient manner and be used to construct filterable process/outcome dashboards, updated in near time (36 hours). This information will provide the necessary baseline data on which multiple of QI projects to improve meaningful outcomes for children with epilepsy will be based.

Establishing a learning healthcare system to improve health outcomes for people with epilepsy.

OBJECTIVE: To describe the organization of the Epilepsy Learning Healthcare System (ELHS), a network that aims to improve care outcomes for people with epilepsy (PWE). MATERIALS AND METHODS: Patients and family partners, providers, researchers, epidemiologists, and other leaders collaborated to recruit epilepsy centers and community services organizations into a novel learning network. A multidisciplinary Coordinating Committee developed ELHS governance and organizational structure, including four key planning Cores (Community, Clinical, Quality Improvement, and Data). Through Quality Improvement (QI) methodology grounded in the Institute for Healthcare Improvement (IHI) model, including iterative Plan-Do-Study-Act (PDSA) rapid learning cycles and other learning and sharing sessions, ELHS equipped epilepsy centers and community organizations with tools to standardize, measure, share, and improve key aspects of epilepsy care. The initial learning cycles addressed provider documentation of seizure frequency and type, and also screening for medication adherence barriers. Rapid learning cycles have been carried out on these initial measures in both clinical centers and community-based settings. Additional key measures have been defined for quality of life, screening, and treatment for mental health and behavioral comorbidities, transition from pediatric to adult care, counseling for women and girls living with epilepsy, referral for specialty care, and prevention and treatment of seizure clusters and status epilepticus. RESULTS: It is feasible to adopt a learning healthcare system framework in epilepsy centers and community services organizations. Through structured collaboration between epilepsy care providers, community support organizations, PWE, and their families/caregivers we have identified new opportunities to improve outcomes that are not available in traditional care models.

Accuracy of ICD-10-CM claims-based definitions for epilepsy and seizure type.

OBJECTIVE: To evaluate the accuracy of ICD-10-CM claims-based definitions for epilepsy and classifying seizure types in the outpatient setting. METHODS: We reviewed electronic health records (EHR) for a cohort of adults aged 18+ years seen by six neurologists who had an outpatient visit at a level 4 epilepsy center between 01/2019-09/2019. The neurologists used a standardized documentation template to capture the diagnosis of epilepsy (yes/no/unsure), seizure type (focal/generalized/unknown), and seizure frequency in the EHR. Using linked ICD-10-CM codes assigned by the provider, we assessed the accuracy of claims-based definitions for epilepsy, focal seizure type, and generalized seizure type against the reference-standard EHR documentation by estimating sensitivity (Sn), specificity (Sp), positive predictive value (PPV), and negative predictive value (NPV). RESULTS: There were 673 eligible outpatient encounters. After review of EHRs for standardized documentation, an analytic sample consisted of 520 encounters representing 402 unique patients. In the EHR documentation, 93.5 % (n = 486/520) of encounters were with patients with a diagnosis of epilepsy. Of those, 66.0 % (n = 321/486) had ≥1 focal seizure, 41.6 % (n = 202/486) had ≥1 generalized seizure, and 7% (n = 34/486) had ≥1 unknown seizure. An ICD-10-CM definition for epilepsy (i.e., ICD-10 G40.X) achieved Sn = 84.4 % (95 % CI 80.8-87.5%), Sp = 79.4 % (95 % CI 62.1-91.3%), PPV = 98.3 % (95 % CI 96.6-99.3%), and NPV = 26.2 % (95 % CI 18.0-35.8%). The classification of focal vs generalized/unknown seizures achieved Sn = 69.8 % (95 % CI 64.4-74.8%), Sp = 79.4 % (95 % CI 72.4-85.3%), PPV = 86.8 % (95 % CI 82.1-90.7%), and NPV = 57.5 % (95 % CI 50.8-64.0%). CONCLUSIONS: Claims-based definitions using groups of ICD-10-CM codes assigned by neurologists in routine outpatient clinic visits at a level 4 epilepsy center performed well in discriminating between patients with and without a diagnosis of epilepsy and between seizure types.

Implementing standardized provider documentation in a tertiary epilepsy clinic.

OBJECTIVE: To incorporate standardized documentation into an epilepsy clinic and to use these standardized data to compare patients' perception of epilepsy diagnosis to provider documentation. METHODS: Using quality improvement methodology, we implemented interventions to increase documentation of epilepsy diagnosis, seizure frequency, and type from 49.8% to 70% of adult nonemployee patients seen by 6 providers over 5 months of routine clinical care. The main intervention consisted of an interactive SmartPhrase that mirrored a documentation template developed by the Epilepsy Learning Healthcare System. We assessed the weekly proportion of complete SmartPhrases among eligible patient encounters with a statistical process control chart. We used a subset of patients with established epilepsy care linked to existing patient-reported survey data to examine the proportion of patient-to-provider agreement on epilepsy diagnosis (yes vs no/unsure). We also examined sociodemographic and clinical characteristics of patients who disagreed vs agreed with provider's documentation of epilepsy diagnosis. RESULTS: The median SmartPhrase weekly completion rate was 78%. Established patients disagreed with providers with respect to epilepsy diagnosis in 18.5% of encounters (κ = 0.13), indicating that they did not have or were unsure if they had epilepsy despite having a provider-documented epilepsy diagnosis. Patients who disagreed with providers were similar to those who agreed with respect to age, sex, ethnicity, marital status, seizure frequency, type, and other quality-of-life measures. CONCLUSION: This project supports the feasibility of implementing standardized documentation of data relevant to epilepsy care in a tertiary epilepsy clinic and highlights an opportunity for improvement in patient-provider communication.

Optimal clinical management of children receiving dietary therapies for epilepsy: Updated recommendations of the International Ketogenic Diet Study Group.

Ketogenic dietary therapies (KDTs) are established, effective nonpharmacologic treatments for intractable childhood epilepsy. For many years KDTs were implemented differently throughout the world due to lack of consistent protocols. In 2009, an expert consensus guideline for the management of children on KDT was published, focusing on topics of patient selection, pre-KDT counseling and evaluation, diet choice and attributes, implementation, supplementation, follow-up, side events, and KDT discontinuation. It has been helpful in outlining a state-of-the-art protocol, standardizing KDT for multicenter clinical trials, and identifying areas of controversy and uncertainty for future research. Now one decade later, the organizers and authors of this guideline present a revised version with additional authors, in order to include recent research, especially regarding other dietary treatments, clarifying indications for use, side effects during initiation and ongoing use, value of supplements, and methods of KDT discontinuation. In addition, authors completed a survey of their institution's practices, which was compared to responses from the original consensus survey, to show trends in management over the last 10 years.

Utility of EEG Activation Procedures in Epilepsy: A Population-Based Study.

PURPOSE: No previous population-based study has addressed the contribution of activation procedures to the yield of epileptiform abnormalities on serial EEGs. We assessed yield of activation-related epileptiform abnormalities and predictors of finding an activation-related abnormality with multiple EEGs in a population-based study of newly diagnosed epilepsy. METHODS: We used the resources of the Rochester Epidemiology Project to identify 449 residents of Rochester, Minnesota with a diagnosis of newly diagnosed epilepsy at age 1 year or older, between 1960 and 1994, who had at least one EEG. Information on all activation procedures (i.e., sleep, hyperventilation, and photic activation) and seizure/epilepsy characteristics was obtained by comprehensive review of medical records. RESULTS: At the first EEG, the yield of epileptiform abnormalities was greatest for individuals 1 to 19 years of age at diagnosis, for each activation procedure. The yield in patients aged 1 to 19 versus ≥20 years was 21.6% versus 10.3% for sleep, 6.5% versus 3.3% for photic stimulation, and 10.3% versus 5% for hyperventilation. Among young people (aged 1-19 years), sleep was associated with an increased likelihood of finding an activation-related abnormality on any EEG. The likelihood of finding an activation-related abnormality on any EEG was decreased for postnatal symptomatic and for unknown etiology. CONCLUSIONS: Among activation procedures, sleep showed the highest yield of epileptiform abnormalities. There was a low yield for photic stimulation and hyperventilation. Within each activation procedure, younger age at diagnosis had the greatest yield. Sleep is the most effective activation procedure, especially in younger patients, and should be performed when possible.

Most Children With Epilepsy Experience Postictal Phenomena, Often Preventing a Return to Normal Activities of Childhood.

BACKGROUND: After a seizure, individuals with epilepsy have reported diverse symptoms in the postictal period, especially motor and cognitive dysfunction. However, these phenomena have not been well characterized in children, and their impact on patient well-being is not understood. We hypothesized that in a subset of epilepsy patients, postictal symptoms would affect their ability to return to normal childhood activities. METHODS: To test our hypothesis, a survey-based approach was used to characterize the type, frequency, and duration, as well as the impact of these symptoms on the ability of these children to return to their normal activities. RESULTS: In this prospective study, data were analyzed from 208 patients seen in the pediatric neurology outpatient clinic at the Alberta Children's Hospital. We found that 86% (179 out of 208) of respondents reported postictal symptoms, with the most common symptom category being fatigue, sleepiness, and/or tiredness (90%; 161 of 179). The greatest impact resulted from weakness or being unable to move normally, which prevented 78% of those affected (71 of 91) from returning to normal activities after a seizure. Children who had focal seizures were more likely to experience postictal fatigue, sleepiness, or tiredness (P = 0.01; Bonferroni corrected), but no other postictal symptoms were significantly associated with a specific seizure type or epilepsy syndrome. CONCLUSIONS: The results of this study further our understanding of the frequency, type, and duration of symptoms experienced in the postictal period and how these symptoms impact children with epilepsy. It is clear that postictal phenomena often occur after epileptic seizures and have a significant impact on the lives of children with epilepsy.

The relationship between d-beta-hydroxybutyrate blood concentrations and seizure control in children treated with the ketogenic diet for medically intractable epilepsy.

Objective: The ketogenic diet (KD) is a proven treatment for drug-resistant (DR) seizures in children and adolescents. However, the relationship between seizure control and the most commonly measured metabolite of the diet, the ketone body d-beta-hydroxybutyrate (D-BHB), is controversial. This study was performed to clarify the relationship because specific ketone bodies may be useful as biomarkers of diet efficacy. Methods: Families of children with DR seizures were approached for participation in this open-label, prospective study when they were referred for the KD at two western Canadian children's hospitals. Inclusion criteria included documentation of DR seizures without exclusion based on age, sex, seizure, or syndrome type. Patients were excluded if they were referred for treatment of a metabolic disorder independent of seizures. Seizures were quantified via parental report and standardized as seizure frequency per 28 days. Epilepsy syndromes were identified on the basis of the medical record. Blood D-BHB was determined by tandem mass spectrometry. Results: A total of 23 patients were recruited from both sites. Data from five individuals were excluded because these seizures occurred in clusters, leaving 18 patients for the primary analysis. In the latter group, a clear positive correlation was present between measures of seizure frequency and D-BHB concentrations. However, this failed to reach statistical significance, likely because of the relatively small numbers. Significance: A trend clearly exists between seizure frequency and D-BHB levels, so we should not be dissuaded by the lack of statistical significance because it possibly results from methodological techniques, especially sample size. These results call for a larger prospective study in which seizure frequency is assessed at the point of care in a standardized fashion so as to determine whether D-BHB can be used as a reliable biomarker of KD efficacy.

Diagnostic Coding for Epilepsy.

Accurate coding is an important function of neurologic practice. This contribution to Continuum is part of an ongoing series that presents helpful coding information along with examples related to the issue topic. Tips for diagnosis coding, Evaluation and Management coding, procedure coding, or a combination are presented, depending on which is most applicable to the subject area of the issue.

How neurologists are paid: Part 3: Hospital support, Veterans Administration, and neurohospitalists.

Part 1 of this series focused on factors influencing payment for patient care services and Part 2 described compensation plans for neurologists in private practice and in academic medicine. In Part 3, we review how hospital salary support and appointments to Veterans Administration hospitals contribute to the salary structure of neurologists. We also discuss neurohospitalist care and ways neurologists can potentially increase compensation from on-call pay, telemedicine, and the use of new transitional care and complex chronic care codes. We conclude with an emphasis on the important role of neurologists as team players in a health care system that will rely on efficient coordination of care among many health care workers.

How neurologists are paid: Part 1: The Medicare payment system.

Neurologists are facing yearly reductions in reimbursement for rendered services. These reductions arise from changes by Medicare, Medicaid, and third-party payers to achieve cost savings. In Part 1, we discuss reimbursement for office visits and procedures, the relative value scale, the conversion factor used by Medicare to transform work into payments, and the recently repealed sustainable growth rate. The establishment of new codes for transitional care and chronic care management may augment the salaries of neurologists who care for patients with chronic conditions. Medicare's recent elimination of payment for consultations and the bundling of nerve conduction studies have dramatically affected reimbursement. Large discrepancies remain between compensation for procedures and office visits.

How neurologists are paid: Part 2: Private practice, research grants, academic and nonclinical activities.

Part 1 of this series focused on factors influencing payment for patient care services. In Part 2, we review compensation models for nonpatient activity such as medical legal reviews, committee participation, and collaboration with the pharmaceutical industry. Compensation to neurologists in private practice is commonly in the form of guaranteed salary and bonuses. Salary for neurologists in academic medicine has changed considerably over the past 3 decades, from small departments with faculty supported by grants and volunteer faculty, to large departments with faculty split between those with research grant support and those focusing on patient care and teaching. Compensation models in academic medicine range from straight salary without bonus to straight salary with personal or shared bonus and salary based on relative value units.

Yield of epileptiform electroencephalogram abnormalities in incident unprovoked seizures: a population-based study.

OBJECTIVE: The yield of epileptiform abnormalities in serial electroencephalography (EEG) studies has not been addressed in a population-based setting for subjects with incident epilepsy or a single unprovoked seizure, raising the possibility of methodologic limitations such as selection bias. Our aim was to address these limitations by assessing the yield and predictors of epileptiform abnormalities for the first and subsequent EEG recording in a study of incident epilepsy or single unprovoked seizure in Rochester, Minnesota. METHODS: We used the resources of the Rochester Epidemiology Project to identify all 619 residents of Rochester, Minnesota, born in 1920 or later with a diagnosis of incident epilepsy (n = 478) or single unprovoked seizure (n = 141) between 1960 and 1994, who had at least one EEG study. Information on all EEG studies and their results was obtained by comprehensive review of medical records. RESULTS: Among subjects with epilepsy, the cumulative yield of epileptiform abnormalities was 53% after the first EEG study and 72% after the third. Among subjects with a single unprovoked seizure, the cumulative yield was 39% after the first EEG study and 68% after the third. Young age at diagnosis and idiopathic etiology were risk factors for finding epileptiform abnormalities across all EEG recordings. SIGNIFICANCE: Although the cumulative yield of epileptiform abnormalities increases over successive EEG recordings, there is a decrease in the increment for each additional EEG study after the first EEG study. This is most evident in incident epilepsy and in younger subjects. Clinically it may be worthwhile to consider that the probability of finding an epileptiform abnormality after the third nonepileptiform EEG recording is low.

Familial risk of epilepsy: a population-based study.

Almost all previous studies of familial risk of epilepsy have had potentially serious methodological limitations. Our goal was to address these limitations and provide more rigorous estimates of familial risk in a population-based study. We used the unique resources of the Rochester Epidemiology Project to identify all 660 Rochester, Minnesota residents born in 1920 or later with incidence of epilepsy from 1935-94 (probands) and their 2439 first-degree relatives who resided in Olmsted County. We assessed incidence of epilepsy in relatives by comprehensive review of the relatives' medical records, and estimated age-specific cumulative incidence and standardized incidence ratios for epilepsy in relatives compared with the general population, according to proband and relative characteristics. Among relatives of all probands, cumulative incidence of epilepsy to age 40 was 4.7%, and risk was increased 3.3-fold (95% confidence interval 2.75-5.99) compared with population incidence. Risk was increased to the greatest extent in relatives of probands with idiopathic generalized epilepsies (standardized incidence ratio 6.0) and epilepsies associated with intellectual or motor disability presumed present from birth, which we denoted 'prenatal/developmental cause' (standardized incidence ratio 4.3). Among relatives of probands with epilepsy without identified cause (including epilepsies classified as 'idiopathic' or 'unknown cause'), risk was significantly increased for epilepsy of prenatal/developmental cause (standardized incidence ratio 4.1). Similarly, among relatives of probands with prenatal/developmental cause, risk was significantly increased for epilepsies without identified cause (standardized incidence ratio 3.8). In relatives of probands with generalized epilepsy, standardized incidence ratios were 8.3 (95% confidence interval 2.93-15.31) for generalized epilepsy and 2.5 (95% confidence interval 0.92-4.00) for focal epilepsy. In relatives of probands with focal epilepsy, standardized incidence ratios were 1.0 (95% confidence interval 0.00-2.19) for generalized epilepsy and 2.6 (95% confidence interval 1.19-4.26) for focal epilepsy. Epilepsy incidence was greater in offspring of female probands than in offspring of male probands, and this maternal effect was restricted to offspring of probands with focal epilepsy. The results suggest that risks for epilepsies of unknown and prenatal/developmental cause may be influenced by shared genetic mechanisms. They also suggest that some of the genetic influences on generalized and focal epilepsies are distinct. However, the similar increase in risk for focal epilepsy among relatives of probands with either generalized (2.5-fold) or focal epilepsy (2.6-fold) may reflect some coexisting shared genetic influences.

Parental ranking of terms describing nonepileptic events.

Paroxysmal nonepileptic events of psychogenic etiology in children and adolescents are common. Patients and their parents are often confused by the terminology used to describe these events. This can lead to frustration and may result in the failure to obtain the necessary nonpharmacologic treatment. Various terms are used to describe such events, some of which might be considered offensive to some individuals. Surveys from 146 parents or guardians of patients identified from a general pediatric clinic, a general neurology clinic, and a pediatric epilepsy monitoring unit were completed with the aim of determining which words and phrases were least offensive. It was determined that nonepileptic events, functional seizures, and nonepileptic attack disorder were the least offensive labels; whereas "it is all in his or her head," hysterical seizures, and psychogenic seizures were the most offensive terms. This is the only study of its type in the pediatric population. Although each child and family requires individualized communication, we hope that this article will provide useful information to guide the practicing pediatric neurologist in informing families that their children are having events of nonepileptic etiology.

Standards for epidemiologic studies and surveillance of epilepsy.

Worldwide, about 65 million people are estimated to have epilepsy. Epidemiologic studies are necessary to define the full public health burden of epilepsy; to set public health and health care priorities; to provide information needed for prevention, early detection, and treatment; to identify education and service needs; and to promote effective health care and support programs for people with epilepsy. However, different definitions and epidemiologic methods complicate the tasks of these studies and their interpretations and comparisons. The purpose of this document is to promote consistency in definitions and methods in an effort to enhance future population-based epidemiologic studies, facilitate comparison between populations, and encourage the collection of data useful for the promotion of public health. We discuss: (1) conceptual and operational definitions of epilepsy, (2) data resources and recommended data elements, and (3) methods and analyses appropriate for epidemiologic studies or the surveillance of epilepsy. Variations in these are considered, taking into account differing resource availability and needs among countries and differing purposes among studies.

EEG and neuroimaging studies in young children having epilepsy surgery.

The aim of this study was to evaluate the yield of electroencephalography and structural and functional neuroimaging in children having resective epilepsy surgery before 5 years of age. Charts of all 28 children (54% male) having resective surgery before 60 months of age at the Mayo Clinic between January 2002 and June 2009 were reviewed. Mean age at seizure onset was 9.6 months (S.D. 12.7); mean age at surgery was 28.8 months (S.D. 17.7). Sixteen children (57%) had partial-onset seizures, 8 (29%) had partial-onset seizures and spasms, and 4 (14%) had spasms alone. Initial surgery type was hemispherectomy in 6 cases, multilobar resection in 8, temporal in 7, and extratemporal in 7. Only 10 of the 25 children (40%) with recorded seizures preoperatively had a well-localized, single ictal focus. Ictal discharge was generalized in 8/25 cases (32%), both generalized and focal in 1 case (4%), hemispheric in 4 cases (16%), and absent in 1 case (4%). Findings from magnetic resonance imaging were abnormal in 27 cases, and revealed focal pathology in 20. Surgical outcome was favorable, with 18 of the 27 survivors (67%) being free, or nearly free, of disabling seizures. In summary, electroencephalography frequently failed to indicate a single ictal focus in young children having epilepsy surgery. In contrast, magnetic resonance imaging was more helpful, revealing focal abnormalities in 74% of patients.