Dale C Hesdorffer

Columbia University, New York, New York, United States

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Publications (134)770.74 Total impact

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    ABSTRACT: We considered whether a subset of children with sudden unexplained death in childhood (SUDC) and a history of febrile seizures (FS) may parallel those in sudden unexpected death in epilepsy (SUDEP). The prevalence of a history of FS was examined, and factors that may distinguish SUDC cases with and without FS were described. Characteristics were assessed in 123 consecutive children with SUDC reported to the SUDC program (4/1/11-3/31/14) by their parents. Parental interview covered the decedent's medical history, circumstances of death, environmental factors, cause of death, and family medical history. Features of SUDC cases were compared by FS history. Overall, 31.7% of SUDC cases had a history of FS, among which 74.4% had simple FS. Compared to those without a history of FS, a history of FS was associated with a greater median age at death (p = 0.03) and death during the weekdays (p = 0.02). Terminal fever was similar in those with and without FS. The median time from FS to death was 6.0 months (interquartile range [IQR] 3.0-10.0). In all SUDC cases, prone position at death, death during sleep, and unwitnessed deaths predominated. There are parallels among SUDC, sudden infant deaths, and sudden unexpected death in epilepsy (SUDEP) with regard to prone position, unwitnessed deaths mostly during sleep, and male predominance. In children with SUDC and a history of FS, terminal fever may increase the risk for an unwitnessed terminal seizure. The greater than expected prevalence of a FS history and the proportion with terminal fever or illness in this cohort suggests that some SUDC deaths may be seizure related and therefore have potential commonalities with SUDEP. Wiley Periodicals, Inc. © 2015 International League Against Epilepsy.
    Epilepsia 06/2015; DOI:10.1111/epi.13066 · 4.58 Impact Factor
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    ABSTRACT: The World Health Organization (WHO) International Classification of Diseases (ICD) has been used to classify causes of morbidity and mortality such as epilepsy for more than 50 years. The aims of this critical commentary are to do the following: (1) Introduce the ICD classification, summarize the ICD-9 and ICD-10 codes for epilepsy and seizures, and discuss the challenges of mapping epilepsy codes between these two versions; (2) discuss how the ICD-9 and ICD-10 relate to the revised International League Against Epilepsy (ILAE) terminology and concepts for classification of seizures and epilepsies; (3) discuss how ICD-coded data have been used for epilepsy care and research and briefly examine the potential impact of the international ICD-10 clinical modifications on research; (4) discuss the upcoming ICD-11 codes and the role of the epilepsy community in their development; and (5) discuss how the ICD-11 will conform more closely to the current ILAE terminology and classification of the epilepsies and seizures and its potential impact on clinical care, surveillance, and public health and research. Wiley Periodicals, Inc. © 2015 International League Against Epilepsy.
    Epilepsia 02/2015; 56(3). DOI:10.1111/epi.12895 · 4.58 Impact Factor
  • Gary Mathern, Astrid Nehlig, Dale C Hesdorffer
    Epilepsia 10/2014; 55(10). DOI:10.1111/epi.12798 · 4.58 Impact Factor
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    ABSTRACT: Objective To examine genetic testing preferences in families containing multiple individuals with epilepsy.Methods One hundred forty-three individuals with epilepsy and 165 biologic relatives without epilepsy from families containing multiple affected individuals were surveyed using a self-administered questionnaire. Four genetic testing scenarios were presented, defined by penetrance (100% vs. 50%) and presence or absence of clinical utility. Potential predictors of genetic testing preferences were evaluated using generalized estimating equations with robust Poisson regression models. The influence of 21 potential testing motivations was also assessed.ResultsFor the scenario with 100% penetrance and clinical utility, 85% of individuals with epilepsy and 74% of unaffected relatives responded that they would definitely or probably want genetic testing. For the scenario with 100% penetrance but without clinical utility, the proportions who responded that they would want testing were significantly lower in both affected individuals (69%) and unaffected relatives (57%). Penetrance (100% vs. 50%) was not a significant predictor of genetic testing interest. The highest-ranking motivations for genetic testing were the following: the possibility that the results could improve health or health care, the potential to know if epilepsy in the family is caused by a gene, and the possibility of changing behavior or lifestyle to prevent seizures.SignificanceInterest in epilepsy genetic testing may be high in affected and unaffected individuals in families containing multiple individuals with epilepsy, especially when testing has implications for improving clinical care.
    Epilepsia 09/2014; DOI:10.1111/epi.12810 · 4.58 Impact Factor
  • Emily B. Leaffer, Dale C. Hesdorffer, Charles Begley
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    ABSTRACT: Background Lack of a sufficient range in socioeconomic status (SES) in most prior studies of felt stigma and epilepsy has hampered the ability to better understand this association. Methods We assessed the burden and associates of felt stigma in 238 individuals with prevalent epilepsy aged 18 and older, comparing low SES with high SES. Results Reported levels of stigma were higher in low SES than in high SES (p < 0.0001), and all psychosocial variables were associated with stigma, including depression severity (p < 0.0001), knowledge of epilepsy (p = 0.006), quality of life (p < 0.0001), social support (p < 0.0001), and self-efficacy (p = 0.0009). Stigma was statistically significantly associated with quality of life in the low SES group and with depression severity and social support in the high SES group. Conclusions Low SES alone did not account for felt stigma; rather, we found that quality of life, depressive symptoms, and social support have the greatest impact on reported felt stigma in individuals with prevalent epilepsy.
    Epilepsy & Behavior 08/2014; 37:104–109. DOI:10.1016/j.yebeh.2014.06.006 · 2.06 Impact Factor
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    ABSTRACT: 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.ResultsAmong 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.SignificanceAlthough 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.
    Epilepsia 07/2014; 55(9). DOI:10.1111/epi.12720 · 4.58 Impact Factor
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    ABSTRACT: On April 30th, 2011 the National Institute of Neurological Disorders and Stroke (NINDS) held a workshop to identify key problems in recent epilepsy clinical trials and propose approaches to address the barriers that impede development of new therapeutic options for epilepsy. Preliminary recommendations were made for selection criteria for subjects entered into epilepsy trials that maximize the scientific impact of the trial and increase the ability to recruit appropriate subjects efficiently and safely. These recommendations were further refined by the authors following the workshop, and subsequently shared with all NINDS workshop participants and with the participants of the 2011 AED XI workshop on epilepsy trials (approximately 200 participants) for further comment. The working group agreed to a final set of criteria that include updated considerations of subject age, clinical semiology, EEG and imaging results, use of prior and current therapies, co-occurring conditions, and suicidality, among others.
    Epilepsy research 07/2014; 108(5). DOI:10.1016/j.eplepsyres.2014.02.011 · 2.19 Impact Factor
  • David J Thurman, Dale C Hesdorffer, Jacqueline A French
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    ABSTRACT: Objective There is not yet a clear consensus on the incidence of sudden unexpected death in epilepsy (SUDEP) or the extent of its burden on public health. In this systematic review, we seek to summarize the incidence of SUDEP and its age distribution, as well as the years of potential life lost and cumulative risks of SUDEP for persons with epilepsy. Methods We conducted a systematic search for epidemiologic studies of sudden death in epilepsy and rated their quality of evidence. We pooled data from comparable higher quality population-based studies of SUDEP incidence across all age groups, calculating the overall incidence of SUDEP per 100,000 population, and per 1,000 people with epilepsy. Using standard formulas, we also calculated the years of potential life lost and cumulative risks associated with SUDEP. ResultsSUDEP has an estimated overall crude annual incidence rate of 0.81 cases per 100,000 population, or 1.16 cases per 1,000 patients with epilepsy. Comparing years of potential life lost from SUDEP with selected other neurologic diseases, SUDEP ranks second only to stroke. SignificanceDespite limitations to the data on which our analysis is based, we conclude that the public health burden of SUDEP, which has previously been underappreciated, is substantial and deserves much more attention from clinicians, researchers, and the public health community.
    Epilepsia 06/2014; 55(10). DOI:10.1111/epi.12666 · 4.58 Impact Factor
  • Ettore Beghi, Dale Hesdorffer
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    ABSTRACT: The incidence, prevalence, and mortality of epilepsy vary across countries with different economies. Differences can be explained by methodological problems, premature mortality, seizure remission, socioeconomic factors, and stigma. Diagnostic misclassification—one possible explanation—may result from inclusion of patients with acute symptomatic or isolated unprovoked seizures. Other sources of bias include age and ethnic origin of the target population, definitions of epilepsy, retrospective versus prospective ascertainment, sources of cases, and experienced and perceived stigma. Premature mortality is an issue in low-income countries (LICs), where treatment gap, brain infections, and traumatic brain injuries are more common than in high-income countries (HICs). Death rates may reflect untreated continued seizures or inclusion of acute symptomatic seizures. Lack of compliance with antiepileptic drugs has been associated with increased risk for death, increased hospital admissions, motor vehicle accidents, and fractures in poor communities. Epilepsy is a self-remitting clinical condition in up to 50% of cases. Studies in untreated individuals from LICs have shown that the proportion of remissions overlaps that of countries where patients receive treatment. When the identification of patients is based on spontaneous reports (e.g., door-to-door surveys), patients in remission may be less likely to disclose the disease for fear of stigmatization with no concurrent benefits. This might lead to underascertainment of cases when assessing the lifetime prevalence of epilepsy. In LICs, the proportion of people living in poverty is greater than in HICs. Poverty is associated with risk factors for epilepsy, risk for developing epilepsy, and increased mortality. The high incidence and prevalence of epilepsy found in LICs is also observed in low income individuals from HICs. Epileptogenic conditions are associated with an increased mortality. This may partly explain the difference between incidence and lifetime prevalence of epilepsy in LICs. Poverty within LICs and HICs could be a preventable cause of mortality in epilepsy.A PowerPoint slide summarizing this article is available for download in the Supporting Information section here.
    Epilepsia 06/2014; 55(7). DOI:10.1111/epi.12579 · 4.58 Impact Factor
  • Annals of Neurology 06/2014; DOI:10.1002/ana.24206 · 11.91 Impact Factor
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    ABSTRACT: Purpose To determine the prevalence of active epilepsy in two southeastern rural Kansas counties. Methods Medical records were abstracted from the emergency rooms, out- and inpatient services and clinics of 9 hospitals, from 10 doctors’ offices, and 1 nursing home in and surrounding the two counties. Letters were mailed from hospitals and doctors’ offices to invite their potentially eligible patients to participate in an interview. Medical record information and the interview, when available, were used for the final determination of active epilepsy, seizure type, etiology, syndrome, age, and gender in consensus conferences. Prevalence of epilepsy was calculated, and capture-recapture methodology, which estimates prevalence based on what is known about the population, was employed to assess active epilepsy in the two counties. Results This study identified 404 individuals with active prevalent epilepsy who visited at least one of the 20 facilities during the observation period. The overall prevalence of active epilepsy was 7.2 per 1,000. The seizure type for 71.3% of prevalent cases was unknown; among the 76 cases with known and classifiable seizure type, 55.3% had focal with secondary generalized seizures. Among the 222 cases with classifiable etiology, 53.1% were idiopathic/cryptogenic. About 75% (n = 301) were captured at only one center, 72% (n = 75) of the remaining 103 patients were captured at two centers, and 28 patients were identified at three or more centers. The capture-recapture assessment yielded an estimation of 982 prevalent patients. The overall estimated prevalence of epilepsy in the two Kansas counties using capture-recapture was 17 per 1,000 population. Conclusions The crude prevalence of epilepsy, using medical record survey methods, was similar to, but on the high end, of other total population prevalence studies in the United States. The capture-recapture assessment suggested that epilepsy prevalence may be considerably higher than the crude prevalence.
    Epilepsy research 05/2014; 108(4). DOI:10.1016/j.eplepsyres.2014.01.001 · 2.19 Impact Factor
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    ABSTRACT: Psychiatric disturbance is common and disabling after traumatic brain injury (TBI). Few studies have investigated the trajectory of psychiatric symptoms in the first 6 months post injury, when monitoring and early treatment might prevent persistent difficulties. The objective of this study was to examine the trajectory of psychiatric symptoms 1-6 months post TBI, the patient/ injury characteristics associated with changes, and characteristics predictive of persisting symptoms. A secondary analysis was performed on data from a clinical trial with 3 data collection points. Across 8 centers, 872 participants with complicated-mild to severe TBI were administered the Brief Symptom Inventory (BSI) at 30, 90, and 180 days post injury. Mixed effects models were used to assess longitudinal changes in the BSI Global Severity Index (GSI). Multivariate logistic regression was used to assess predictors of clinically significant GSI elevations persisting to 6 months post TBI. In general, GSI scores improved over time. Women improved faster than men; race/ ethnicity was also significantly associated with rate of change, with Hispanics showing the most and African Americans the least improvement. Clinically significant psychiatric symptoms (caseness) occurred in 42% of the sample at 6 months, and >1 type of symptom was common. Significant predictors of caseness included African American race, age from 30-60 years, longer post-traumatic amnesia (PTA) duration, pre-TBI unemployment, and pre-TBI risky alcohol use. Findings indicate that psychiatric symptoms are common in the first 6 months post TBI and frequently extend beyond the depression and anxiety symptoms that may be most commonly screened. Patients with longer PTA and pre-injury alcohol misuse may need more intensive monitoring for symptom persistence.
    Journal of neurotrauma 04/2014; 31(7):610-617. DOI:10.1089/neu.2013.3041 · 3.97 Impact Factor
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    ABSTRACT: Epilepsy was defined conceptually in 2005 as a disorder of the brain characterized by an enduring predisposition to generate epileptic seizures. This definition is usually practically applied as having two unprovoked seizures >24 h apart. The International League Against Epilepsy (ILAE) accepted recommendations of a task force altering the practical definition for special circumstances that do not meet the two unprovoked seizures criteria. The task force proposed that epilepsy be considered to be a disease of the brain defined by any of the following conditions: (1) At least two unprovoked (or reflex) seizures occurring >24 h apart; (2) one unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years; (3) diagnosis of an epilepsy syndrome. Epilepsy is considered to be resolved for individuals who either had an age-dependent epilepsy syndrome but are now past the applicable age or who have remained seizure-free for the last 10 years and off antiseizure medicines for at least the last 5 years. “Resolved” is not necessarily identical to the conventional view of “remission or “cure.” Different practical definitions may be formed and used for various specific purposes. This revised definition of epilepsy brings the term in concordance with common use.A PowerPoint slide summarizing this article is available for download in the Supporting Information section here.
    Epilepsia 04/2014; 55(4). DOI:10.1111/epi.12550 · 4.58 Impact Factor
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    ABSTRACT: Historically, epilepsy has been ignored by the public health community, despite the fact that there are more than 2 million people with epilepsy in the United States. Although epilepsy affects 1 in 26 people during their lifetime, the general public lacks basic knowledge and holds misperceptions about epilepsy that contribute to its associated stigma. Consequently, people with epilepsy continue to fare poorly, with lower physical, mental, and social well-being.Recently, the 2012 Institute of Medicine (IOM) report Epilepsy Across the Spectrum: Promoting Health and Understanding inspired a new sense of enthusiasm in the epilepsy community that can serve as a catalyst to change public perceptions about epilepsy. To erase stigma, the IOM committee made recommendations in two areas: (a) informing the media and (b) coordinating public awareness. The committee also identified eight key messages about epilepsy that the public should know. Health promotion and education professionals can play a critical role in disseminating these messages to the general public in their local communities and supporting interventions and policies to change the face of epilepsy.
    Health Promotion Practice 03/2014; DOI:10.1177/1524839914523779 · 0.55 Impact Factor
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    ABSTRACT: Objective Treatment of seizures varies by region, with no standard emergency treatment protocol. Febrile status epilepticus (FSE) is often a child's first seizure; therefore, families are rarely educated about emergency treatment. Methods From 2002 to 2010, 199 subjects, age 1month to 6years, were recruited as part of a prospective, multicenter study of consequences of FSE, which was defined as a febrile seizure or series of seizures lasting >30min. The patients' charts were reviewed. No standardized treatment protocol was implemented for this observational study. ResultsOne hundred seventy-nine children received at least one antiepileptic drug (AED) to terminate FSE, and more than one AED was required in 140 patients (70%). Median time from the seizure onset to first AED by emergency medical services (EMS) or emergency department (ED) was 30min. Mean seizure duration was 81min for subjects given medication prior to ED and 95min for those who did not (p=0.1). Median time from the first dose of AED to end of seizure was 38min. Initial dose of lorazepam or diazepam was suboptimal in 32 (19%) of 166 patients. Ninety-five subjects (48%) received respiratory support by EMS or ED. Median seizure duration for the respiratory support group was 83min; for the nonrespiratory support group the duration was 58min (p-value<0.001). Reducing the time from seizure onset to AED initiation was significantly related to shorter seizure duration. SignificanceFSE rarely stops spontaneously, is fairly resistant to medications, and even with treatment persists for a significant period of time. The total seizure duration is composed of two separate factors, the time from seizure onset to AED initiation and the time from first AED to seizure termination. Earlier onset of treatment results in shorter total seizure duration. A standard prehospital treatment protocol should be used nationwide and education of EMS responders is necessary.
    Epilepsia 03/2014; 55(3). DOI:10.1111/epi.12526 · 4.58 Impact Factor
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    Epilepsy & Behavior 03/2014; 32. DOI:10.1016/j.yebeh.2013.12.017 · 2.06 Impact Factor
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    Epilepsy & Behavior 03/2014; 32. DOI:10.1016/j.yebeh.2013.12.018 · 2.06 Impact Factor
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    ABSTRACT: To investigate the cumulative probability of death and the standardised mortality ratio (SMR) in an adult drug-resistant epilepsy (DRE) population. In two separate centres during 2003-2006, we identified a total of 433 patients with DRE defined as at least one seizure per month and failure of at least two antiepileptic drugs. These patients were subsequently followed for a total follow-up of 6 years. We examined the cumulative probability of death, using Kaplan-Meier methodology, and the SMR based on mortality data from the Social Security Death Index. Clinical predictors of death were evaluated using Cox regression analysis. The cumulative probability of death was 8.7% (95% CI 6.2% to 12.1%) at 6 years. The overall SMR was 2.4 (95% CI 1.7 to 3.3). It was 3.1; 95% CI 2.0 to 4.6 in subjects with remote or progressive aetiology and 1.7; 95% CI 0.8 to 2.8 in subjects with unknown aetiology. The SMR was significantly increased in those with a known remote aetiology (2.5; 95% CI (1.4 to 3.8)). Older age at enrolment and symptomatic generalised epilepsy syndrome were significant predictors of death. Mortality is increased in this drug-resistant population; largely driven by those with a known epilepsy aetiology. The increased mortality remains even after exclusion of those with a progressive aetiology. Previous studies of incident epilepsy cohorts revealed increased mortality that declines to near-normal levels after the first several years, but in our DRE cohort, mortality remains elevated despite a median duration of epilepsy of 25 years at study entry.
    Journal of neurology, neurosurgery, and psychiatry 02/2014; 85(10). DOI:10.1136/jnnp-2013-307074 · 5.58 Impact Factor
  • Torbjörn Tomson, Dale C Hesdorffer
    The Lancet 02/2014; 383(9916):510. DOI:10.1016/S0140-6736(14)60178-1 · 45.22 Impact Factor
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    ABSTRACT: Objective: Whether febrile status epilepticus (FSE) produces hippocampal sclerosis (HS) and temporal lobe epilepsy (TLE) has long been debated. Our objective is to determine if FSE produces acute hippocampal injury that evolves to HS. Methods: FEBSTAT and two affiliated studies prospectively recruited 226 children aged 1 month to 6 years with FSE and controls with simple febrile seizures. All had acute MRIs and follow-up MRIs were obtained at approximately 1 year later in the majority. Visual interpretation by two neuroradiologists informed only of subject age was augmented by hippocampal volumetrics, analysis of the intra-hippocampal distribution of T2 signal, and apparent diffusion coefficients. Results: Hippocampal T2 hyperintensity, maximum in Sommer's sector, occurred acutely after FSE in 22 of 226 children in association with increased volume. Follow-up MRIs obtained on 14 of the 22 with acute T2 hyperintensity showed HS in 10 and reduced hippocampal volume in 12. In contrast, follow-up of 116 children without acute hyperintensity showed abnormal T2 signal in only 1 (following another episode of FSE). Furthermore, compared to controls with simple febrile seizures, FSE subjects with normal acute MRIs had abnormally low right to left hippocampal volume ratios, smaller hippocampi initially and reduced hippocampal growth. Interpretation: Hippocampal T2 hyperintensity after FSE represents acute injury often evolving to a radiological appearance of HS after one year. Furthermore, impaired growth of normal appearing hippocampi after FSE suggests subtle injury even in the absence of T2 hyperintensity. Longer follow-up is needed to determine the relationship of these findings to TLE. ANN NEUROL 2013. © 2013 American Neurological Association.
    Annals of Neurology 02/2014; 75(2). DOI:10.1002/ana.24081 · 11.91 Impact Factor

Publication Stats

5k Citations
770.74 Total Impact Points


  • 1996–2015
    • Columbia University
      • • Department of Epidemiology
      • • Gertrude H. Sergievsky Center
      • • College of Physicians and Surgeons
      New York, New York, United States
  • 2011
    • University of Pavia
      Ticinum, Lombardy, Italy
  • 2005
    • Weill Cornell Medical College
      New York City, New York, United States
  • 2001
    • Gracie Square Hospital, New York, NY
      New York City, New York, United States
  • 1999
    • Mayo Clinic - Rochester
      • Department of Health Science Research
      Rochester, MN, United States
  • 1990
    • New York State
      New York City, New York, United States