Gretchen L Birbeck

University of Rochester, Rochester, New York, United States

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Publications (173)1607.2 Total impact

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    Full-text · Article · Dec 2015 · The Journal of Headache and Pain
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    ABSTRACT: Three headache disorders - migraine, tension-type headache (TTH) and medication-overuse headache (MOH) - are major contributors to population ill-health. Policy-makers need local knowledge of these to guide priority-setting. Earlier we reported the prevalence of these disorders in Zambia; here we describe the burdens attributable to them. This was a cross-sectional population-based survey of adults aged 18-65 years, selected by cluster-randomized sampling in the mostly urban Lusaka Province and mostly rural Southern Province. Interviewers visiting households used a structured questionnaire. Diagnoses made algorithmically applied ICHD-II criteria. Burden enquiry focused on the previous 3 months and the day before interview. Disability was estimated by applying disability weights (DWs) from the Global Burden of Disease Survey 2010. From 1,134 households, 1,085 unrelated adults (450 male, 635 female) were interviewed (refusal rate 4.3%). The gender- and habitation-adjusted 1-year prevalence of migraine was 22.9%, of TTH 22.8%, of headache on ≥15 days/month 11.5%, of probable MOH (pMOH) 7.1%. Reported mean intensity of migraine attacks was 2.7, representing severe pain. People with migraine spent 10.0% of their time in the ictal state (DW: 0.433); they were therefore 4.3% disabled overall. Disability from TTH was much lower. People with pMOH (time with headache: 37.5%; DW: 0.220) were 8.3% disabled overall. Average lost productive time in the preceding 3 months for migraine was 4.1 days from work (6.3% loss) and 4.2 days (4.7% loss) from household work. Losses for pMOH were 4.8 days (7.4% loss) from work and 4.5 days (5.0% loss) from household work. In the population aged 18-65 years (effectively the working population), estimated disability from migraine was 0.98%, with 1.4% of workdays lost, and from pMOH was 0.59%, with 0.53% of workdays lost. Headache yesterday was reported by 28.3% of participants, whose average productivity yesterday was 55.9% of expectation. Zambia loses 1.93% of GDP to headache, and action is required to mitigate this loss and the associated suffering. Structured headache services with their basis in primary care are the most efficient, effective, affordable and equitable solution. They could be implemented within the existing health-care infrastructure of Zambia. These matters require urgent political attention.
    Full-text · Article · Dec 2015 · The Journal of Headache and Pain
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    ABSTRACT: Little is known of the epidemiology of primary headache disorders in sub-Saharan Africa. We performed a population-based survey in Zambia using methods previously tested in multiple other countries. This cross-sectional survey was conducted by visiting households unannounced, using cluster-randomized sampling, in the mostly urban Lusaka Province and mostly rural Southern Province. Within clusters, households were selected randomly, as was one adult member (18-65 years old) of each selected household. A structured questionnaire, translated into the local languages, was administered face-to-face by trained interviewers. Demographic enquiry was followed by diagnostic questions based on ICHD-II criteria. A random sub-sample of participants were invited for subsequent physician-interview to validate the diagnostic part of the questionnaire. Of 1,134 eligible household members contacted, 1,085 (450 male, 887 urban) consented to interview (refusal rate 4.3%). Others who had been selected but remained unavailable on three visits were not counted as refusals since their reasons were unknown, but gave rise to gender biases, being mostly male in urban areas and mostly female in rural areas. Statistical correction was applied. Adjusted for gender and habitation (urban/rural), the 1-year prevalence of any headache was 61.6%, of migraine 22.9%, of tension-type headache (TTH) 22.8%, of headache on ≥15 days/month 11.5% and of probable medication-overuse headache (pMOH) 7.1%. The adjusted point-prevalence of any headache (headache yesterday) was 19.1%. There was a small proportion (5.3%) of unclassified headache, some of which may have been secondary. The overwhelmingly strong association was between urban dwelling and pMOH (OR: 8.6; P=0.0001), with an urban prevalence of 14.5% (gender-adjusted). Validation of the questionnaire was limited by participants' reluctance to present for physician review, substantial delays in doing so and major self-selection bias among those who did. These were unavoidable problems in resource-limited Zambia. Primary headache disorders, common in high-income countries, are at least as prevalent in Zambia, a sub-Saharan African country. The selectively urban problem of pMOH seems likely to reflect ready availability of non-prescription analgesics, without easy access to professional health care for headache or any focused public-health education regarding correct usage of analgesics or the dangers of their overuse.
    Full-text · Article · Dec 2015 · The Journal of Headache and Pain
  • Gretchen L Birbeck · Ana-Claire Meyer · Adesola Ogunniyi
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    ABSTRACT: The resiliency of the adult nervous system is markedly affected by the environment and the circumstances during infant and child development. As such, adults in resource-limited settings who may have experienced early deprivation are particularly vulnerable to subsequent neurological disorders. Adult populations in countries with relatively recent advances in economic development may still have a higher susceptibility to neurological illness or injury that is reflective of the socioeconomic environment that was present during that population's infancy and childhood. Brain and peripheral nervous system research conducted over the past decade in resource-limited settings has led to an impressive and growing body of knowledge that informs our understanding of neurological function and dysfunction, independent of geography. Neurological conditions feature prominently in the burgeoning epidemic of non-communicable diseases facing low- and middle-income countries. Neurological research in these countries is needed to address this burden of disease. Although the burden of more prevalent and severe neurological disease poses public health and clinical challenges in settings with limited neurological expertise, the same factors, along with genetic heterogeneity and the relative absence of ingrained clinical care practices, offer circumstances well-suited for the conduct of crucial future research that is globally relevant.This article has not been written or reviewed by Nature editors. Nature accepts no responsibility for the accuracy of the information provided.
    No preview · Article · Nov 2015 · Nature
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    ABSTRACT: The aim of the study was to describe patient characteristics and outcomes among HIV-positive adults presenting to a Zambian tertiary care hospital with new-onset seizures. From July 2011 to June 2013, adults with seizures and a known or probable diagnosis of HIV infection were screened for a cohort study. Demographic and clinical data were obtained, including information on engagement in HIV services and in-patient mortality. Analyses were conducted to identify characteristics associated with poor engagement in care and death. A total of 320 of 351 screened adults were HIV-positive, with 268 of 320 experiencing new-onset seizures. Of these, 114 of 268 (42.5%) were female, and their mean age was 36.8 years. Seventy-nine of the 268 patients (29.5%) were diagnosed with HIV infection during the index illness. Among those who were aware of their HIV-positive status, 59 of 156 (37.8%) had disengaged from care. Significant functional impairment (Karnofsky score < 50) was evident in 44.0% of patients. Cerebrospinal fluid was not obtained in 108 of 268 (40.3%). In-patient mortality outcomes were available for 214 patients, and 47 of these 214 (22.0%) died during hospitalization. Patients with significant functional impairment were more likely to undergo lumbar puncture (P = 0.046). Women and the functionally impaired were more likely to die (P = 0.04 and < 0.001, respectively). Despite the availability of care, less than half of HIV-infected people with new-onset seizures were actively engaged in care and in-patient mortality rates were high. In the absence of clinical contraindication, lumbar puncture should be performed to diagnose treatable conditions and reduce morbidity and mortality. Continued efforts are needed to expand community-based testing and improve HIV care retention rates. Qualitative studies are needed to elucidate factors contributing to lumbar puncture usage in this population. © 2015 British HIV Association.
    No preview · Article · Jul 2015 · HIV Medicine
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    ABSTRACT: In 1891, Winter(1) described the first 4 cases of tuberculous meningitis (TBM), in which paracenteses of the theca vertebralis was performed to relieve cerebrospinal fluid (CSF) fluid pressure. Since this original description of the lumbar puncture (LP) procedure, neurologists worldwide have relied on LPs for both diagnostic and therapeutic purposes. In resource-limited settings, LPs are often the only neurologic test available to aid the clinician in neurologic diagnosis. In sub-Saharan Africa, a large number of patients present to hospitals with acute neurologic symptoms, including those who are HIV-infected and have opportunistic infections such as cryptococcal meningitis and TBM. In these clinical scenarios, LPs are an essential point-of-care diagnostic and therapeutic procedure.(2) The benefits of the LP as a diagnostic tool are well-known, but it is important to emphasize that therapeutic LPs are a low-cost measure to monitor and treat intracranial pressure (ICP) due to nonobstructive hydrocephalus in regions of the world where more sophisticated testing and treatment are unavailable due to limitations of medical equipment, medication supplies, and clinical personnel, including specialized neurologists and neurosurgeons.
    No preview · Article · May 2015 · Neurology
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    Full-text · Article · Apr 2015 · Epilepsia
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    ABSTRACT: Case fatality rates among African children with cerebral malaria remain in the range of 15 to 25%. The key pathogenetic processes and causes of death are unknown, but a combination of clinical observations and pathological findings suggests that increased brain volume leading to raised intracranial pressure may play a role. Magnetic resonance imaging (MRI) became available in Malawi in 2009, and we used it to investigate the role of brain swelling in the pathogenesis of fatal cerebral malaria in African children. We enrolled children who met a stringent definition of cerebral malaria (one that included the presence of retinopathy), characterized them in detail clinically, and obtained MRI scans on admission and daily thereafter while coma persisted. Of 348 children admitted with cerebral malaria (as defined by the World Health Organization), 168 met the inclusion criteria, underwent all investigations, and were included in the analysis. A total of 25 children (15%) died, 21 of whom (84%) had evidence of severe brain swelling on MRI at admission. In contrast, evidence of severe brain swelling was seen on MRI in 39 of 143 survivors (27%). Serial MRI scans showed evidence of decreasing brain volume in the survivors who had had brain swelling initially. Increased brain volume was seen in children who died from cerebral malaria but was uncommon in those who did not die from the disease, a finding that suggests that raised intracranial pressure may contribute to a fatal outcome. The natural history indicates that increased intracranial pressure is transient in survivors. (Funded by the National Institutes of Health and Wellcome Trust U.K.).
    No preview · Article · Mar 2015 · New England Journal of Medicine
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    ABSTRACT: To describe acute EEG findings in HIV-infected adults with new-onset seizure, assess baseline clinical characteristics associated with EEG abnormalities, and evaluate the relationship between EEG abnormalities and recurrent seizure. Eighty-one HIV-infected adults with new-onset seizure had EEG recordings during their index admission. Baseline characteristics assessed included HIV stage, seizure semiology, serum and CSF studies, neuroimaging, cognitive function based on the Zambian Mini-Mental State Examination and International HIV Dementia Scale, and psychiatric symptoms using the Shona Symptom Questionnaire. We evaluated the relationship between baseline characteristics and EEG abnormalities. Patients were followed for seizure recurrence, and the association between acute EEG abnormalities and seizure recurrence was assessed. Death was a secondary outcome. Fifty-five patients had abnormal EEGs (68%): 18 (22%) had interictal spikes (12) or a recorded seizure (6). Among baseline clinical characteristics, more advanced HIV disease (p = 0.039) and any imaging abnormality (p = 0.027) were associated with abnormal EEGs. Cortical (p = 0.008) and white matter (p = 0.004) abnormalities were associated with slow posterior dominant rhythm. Patients were followed for a median of 303 days (interquartile range 103-560). Twenty-four (30%) died and 23 (28%) had recurrent seizures. EEG abnormalities were not associated with recurrent seizure. There was a nonsignificant association between seizures recorded during EEG and death (67% vs 26%, p = 0.051). EEG abnormalities are common in this population, particularly in patients with imaging abnormalities and advanced HIV. Acute EEG abnormalities were not associated with recurrent seizure, but high mortality rates during follow-up limited this analysis. © 2015 American Academy of Neurology.
    No preview · Article · Mar 2015 · Neurology
  • Gretchen L. Birbeck

    No preview · Article · Jan 2015 · Annals of Neurology
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    ABSTRACT: Epilepsy-associated stigma is an important patient-centered outcome, yet quantification remains challenging. Jacoby's 3-item Stigma Scale is commonly used to assess felt stigma among people with epilepsy (PWE) yet has ceiling effects. The Stigma Scale of Epilepsy (SSE) is a 24-item instrument that measures felt stigma among PWE and stigmatizing attitudes among others. If cross-culturally valid, the SSE may elucidate stigma determinants and provide an outcome measure for interventions. We assessed the properties of the SSE in 102 Zambian PWE using exploratory and confirmatory item response theories and compared the latent traits assessed by the SSE to those assessed by Jacoby's Stigma Scale. Differential item functioning based on forced disclosure of epilepsy was examined. The SSE yielded two latent traits-the first reflected difficulties faced by PWE; the second reflected emotions associated with epilepsy. Jacoby's Stigma Scale was associated only with the first latent trait. Forced disclosure was associated with "worry" and "pity" that were associated with the second latent trait. In Zambian PWE, the SSE captured two latent traits. One trait represents feelings associated with epilepsy, which is theorized as a substantial yet unmeasured part of stigma. The SSE performs well across cultures and may more comprehensively assess felt stigma than other instruments. Further validation is required to determine whether the SSE adequately assesses stigmatizing attitudes among people without epilepsy.
    No preview · Article · Nov 2014 · Quality of Life Research
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    ABSTRACT: In HIV-positive individuals with first seizure, we describe neuroimaging findings, detail clinical and demographic risk factors for imaging abnormalities, and evaluate the relationship between imaging abnormalities and seizure recurrence to determine if imaging abnormalities predict recurrent seizures. Among 43 participants (mean 37.4 years, 56% were male), 16 (37%) were on antiretroviral drugs, 32 (79%) had advanced HIV disease, and (28) 66% had multiple seizures and/or status epilepticus at enrollment. Among those with cerebrospinal fluid studies, 14/31 (44%) had opportunistic infections (OIs). During follow-up, 9 (21%) died and 15 (35%) experienced recurrent seizures. Edema was associated with OIs (odds ratio: 8.79; confidence interval: 1.03-236) and subcortical atrophy with poorer scores on the International HIV Dementia Scale) (5.2 vs. 9.3; P=0.002). Imaging abnormalities were not associated with seizure recurrence or death (P>0.05). Seizure recurrence occurred in at least a third and over 20% died during follow-up. Imaging was not predictive of recurrent seizure or death, but imaging abnormalities may offer additional diagnostic insights in terms of OI risk and cognitive impairment.
    Full-text · Article · Oct 2014 · Neurology International
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    ABSTRACT: A prospective cohort study of new-onset seizure in people with human immunodeficiency virus (HIV) in Zambia is ongoing to determine the incidence of subsequent epilepsy and risk factors for epileptogenesis in this population. At enrollment, we evaluated this cohort for cognitive impairment and psychiatric morbidity. Over 50% of participants had cognitive impairment and significant psychiatric morbidity. Most participants had advanced HIV disease based on CD4+ T-cell count and World Health Organization stage, but we found no association between cognitive impairment or psychiatric morbidity and HIV disease staging.
    Full-text · Article · Oct 2014 · The American journal of tropical medicine and hygiene

  • No preview · Conference Paper · Oct 2014
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    Full-text · Article · Sep 2014 · The Journal of Headache and Pain
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    ABSTRACT: Our goals were to understand the brain magnetic resonance imaging (MRI) findings in children with retinopathy-negative cerebral malaria (CM) and investigate whether any findings on acute MRI were associated with adverse outcomes. We performed MRI scans on children admitted to the hospital in Blantyre, Malawi with clinically defined CM. Two hundred and seventeen children were imaged during the study period; 44 patients were malarial retinopathy-negative; and 173 patients were retinopathy-positive. We compared MRI findings in children with retinopathy-negative and retinopathy-positive CM. In children who were retinopathy-negative, we identified MRI variables that were associated with death and adverse neurologic outcomes. On multivariate analysis, cortical diffusion weighted imaging (DWI) abnormality and increased brain volume were strongly associated with neurologic morbidity in survivors. Investigations to explore the underlying pathophysiologic processes responsible for these MRI changes are warranted.
    No preview · Article · Sep 2014 · The American journal of tropical medicine and hygiene
  • Melissa A Elafros · Esther Bui · Gretchen L Birbeck
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    ABSTRACT: Phenobarbital remains one of the most widely used antiepileptic drugs worldwide, yet there are limited data regarding side effects associated with its use in routine clinical care settings in low-income countries. Available data suggests that phenobarbital is as effective as other first-line drugs for treating tonic-clonic seizures, but side effect reports differ widely between high and low-income settings. A better understanding of phenobarbital side effect profile and severity in low-income settings is warranted given its role in efforts to decrease the epilepsy treatment gap. We used the Liverpool adverse events profile (LEAP) to assess side effects in consecutive patients with epilepsy on phenobarbital seeking care in rural Zambia. Data regarding age, gender, medication dose, and medication adherence were also collected. T-tests and Spearman's correlation coefficient were used to assess predictors of LEAP score and medication adherence. Thirty-five patients receiving a mean dose of 2.1mg/kg/day (SD: 2.78mg/kg/day) of phenobarbital were assessed. All participants reported at least one side effect in the previous four weeks with a median of 6 symptoms (IQR: 4-8) and a mean side effects score of 28/76 (SD: 5.38). Over half reported sleepiness and dizziness. Memory problems and depression were also common (both 46%). Total LAEP score was not associated with age (p=0.88), gender (p=0.17), or phenobarbital dose (p=0.13). Medication adherence was not associated with side effects total score (p=0.56). Rural Zambian adults taking phenobarbital at doses recommended by the World Health Organization report a significant number of side effects. The most common side effects reported were similar to those reported in high-income countries. The significant burden of phenobarbital-associated side effects in this African cohort is in contrast to data from non-randomized clinical trials in China that reported phenobarbital to be well-tolerated with few side effects. Additional investigations regarding phenobarbital side effects during routine care in low income settings is warranted.
    No preview · Article · Aug 2014 · Epilepsy Research
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    Jo M. Wilmshurst · Gretchen L. Birbeck · Charles R. Newton
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    ABSTRACT: The incidence and prevalence of active epilepsy are greatest in Africa compared to all other continents, even those with equivalent poor settings. This is a reflection of the high levels of structural and metabolic causes and may reflect an increased risk in parts of the continent. The full burden of epilepsy, which includes the social and medical morbidity of the disorder and where people with epilepsy are heavily stigmatized and frequently untreated, cannot be fully assessed even using the disability adjusted life-years, since the assigned disability weights are not specific to these regions. The burden is further exacerbated by social, geographic, and economic barriers to care and the inability of African health systems to manage people with epilepsy effectively because of lack of trained personnel, limited facilities, and poor access to effective or sustained supplies of antiepileptic drugs, or even therapy at all. The situation is compounded by a probable underestimation of the prevalence and incidence of people with epilepsy related to the major stigma associated with the condition in Africa, and the limited training available to most health care workers who are the primary point of assessing most people with epilepsy. Finding innovative ways to address the huge barriers faced by people with epilepsy in Africa needs to be a major goal for the millennium.A PowerPoint slide summarizing this article is available for download in the Supporting Information section here.
    Full-text · Article · Jul 2014 · Epilepsia
  • Gretchen L Birbeck

    No preview · Article · Jun 2014 · Annals of Neurology
  • Kirsten M Fiest · Gretchen L Birbeck · Ann Jacoby · Nathalie Jette
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    ABSTRACT: Stigma remains a weight those with epilepsy have to carry and a defining feature of their identity. This article highlights recent studies published in the area of stigma, knowledge, attitudes, and practices regarding epilepsy. First, recent studies addressing the frequency of stigma and factors associated with stigma are discussed. Second, tools developed to ascertain stigma in epilepsy, or knowledge, attitudes, and practices, are examined. Lastly, we discuss interventions recently studied to reduce stigma in epilepsy.
    No preview · Article · May 2014 · Current Neurology and Neuroscience Reports

Publication Stats

7k Citations
1,607.20 Total Impact Points


  • 2013-2015
    • University of Rochester
      Rochester, New York, United States
    • University of Zambia
      Lusaka, Lusaka, Zambia
  • 2002-2015
    • Michigan State University
      • • Department of Epidemiology
      • • College of Human Medicine
      Ист-Лансинг, Michigan, United States
  • 2011
    • St. Olavs Hospital
      Nidaros, Sør-Trøndelag, Norway
  • 2010
    • Vassar College
      Poughkeepsie, New York, United States
  • 2000
    • University of California, Los Angeles
      • Department of Medicine
      Los Angeles, CA, United States