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The Global Campaign against Headache, as a collaborative activity with the World Health Organization (WHO), was formally launched in Copenhagen in March 2004. In the month it turns 18, we review its activities and achievements, from initial determination of its strategic objectives, through partnerships and project management, knowledge acquisition and awareness generation, to evidence-based proposals for change justified by cost-effectiveness analysis. [ABSTRACT FROM AUTHOR]

Purpose: 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. Methods: 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. Results: 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. Conclusions: 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. [ABSTRACT FROM AUTHOR]

In 2011, the World Health Organization's (WHO) mental health Gap Action Programme (mhGAP) released evidence-based epilepsy-care guidelines for use in low and middle income countries (LAMICs). From a geographical, sociocultural, and political perspective, LAMICs represent a heterogenous group with significant differences in the epidemiology, etiology, and perceptions of epilepsy. Successful implementation of the guidelines requires local adaptation for use within individual countries. For effective implementation and sustainability, the sense of ownership and empowerment must be transferred from the global health authorities to the local people. Sociocultural and financial barriers that impede the implementation of the guidelines should be identified and ameliorated. Impact assessment and program revisions should be planned and a budget allocated to them. If effectively implemented, as intended, at the primary-care level, the mhGAP guidelines have the potential to facilitate a substantial reduction in the epilepsy treatment gap and improve the quality of epilepsy care in resource-limited settings. [ABSTRACT FROM AUTHOR]

Background/Aim: Neuropathy is the most common neurologic complication of HIV but is widely under-diagnosed in resource-constrained settings. We aimed to identify tools that accurately distinguish individuals with moderate/severe peripheral neuropathy and can be administered by non-physician healthcare workers (HCW) in resource-constrained settings. Methods: We enrolled a convenience sample of 30 HIV-infected outpatients from a Kenyan HIV-care clinic. A HCW administered the Neuropathy Severity Score (NSS), Single Question Neuropathy Screen (Single-QNS), Subjective Peripheral Neuropathy Screen (Subjective-PNS), and Brief Peripheral Neuropathy Screen (Brief-PNS). Monofilament, graduated tuning fork, and two-point discrimination examinations were performed. Tools were validated against a neurologist's clinical assessment of moderate/severe neuropathy. Results: The sample was 57% male, mean age 38.6 years, and mean CD4 count 324 cells/¼L. Neurologist's assessment identified 20% (6/30) with moderate/severe neuropathy. Diagnostic utilities for moderate/severe neuropathy were: Single- QNS - 83% sensitivity, 71% specificity; Subjective-PNS-total - 83% sensitivity, 83% specificity; Subjective-PNS-max and NSS - 67% sensitivity, 92% specificity; Brief-PNS - 0% sensitivity, 92% specificity; monofilament - 100% sensitivity, 88% specificity; graduated tuning fork - 83% sensitivity, 88% specificity; two-point discrimination - 75% sensitivity, 58% specificity. Conclusions: Pilot testing suggests Single-QNS, Subjective-PNS, and monofilament examination accurately identify HIV-infected patients with moderate/severe neuropathy and may be useful diagnostic tools in resource-constrained settings. [ABSTRACT FROM AUTHOR]

Although 80% of people with epilepsy reside in resource poor, developing countries, epilepsy care in these regions remains limited and the majority of epilepsy patients go untreated. Cost-effective, sustainable epilepsy care services, delivering first-line antiepileptic drugs through established primary health care facilities, are needed to decrease these treatment gaps. Neurologists with local experience and knowledge of the culture, who are willing to serve as educators, policy advisors, and advocates, can make a difference. This is Part II of a two-part article. Part I reviewed the burden of epilepsy and the current state of resources for treatment in developing countries, while Part II will now discuss various aspects of care in these countries. [ABSTRACT FROM AUTHOR]

Summary: Background: Among the 40 million people with epilepsy worldwide, 80% reside in low-income regions where human and technological resources for care are extremely limited. Qualitative and experiential reports indicate that people with epilepsy in Africa are also disadvantaged socially and economically, but few quantitative systematic data are available. We sought to assess the social and economic effect of living with epilepsy in sub-Saharan Africa. Methods: We did a cross-sectional study of people with epilepsy concurrently matched for age, sex, and site of care to individuals with a non-stigmatised chronic medical condition. Verbally administered questionnaires provided comparison data for demographic characteristics, education, employment status, housing and environment quality, food security, healthcare use, personal safety, and perceived stigma. Findings: People with epilepsy had higher mean perceived stigma scores (1·8 vs 0·4; p<0·0001), poorer employment status (p=0·0001), and less education (7·1 vs 9·4 years; p<0·0001) than did the comparison group. People with epilepsy also had less education than their nearest-age same sex sibling (7·1 vs 9·1 years; p<0·0001), whereas the comparison group did not (9·4 vs 9·6 years; p=0·42). Housing and environmental quality were poorer for people with epilepsy, who had little access to water, were unlikely to have electricity in their home (19%vs 51%; p<0·0001), and who had greater food insecurity than did the control group. During pregnancy, women with epilepsy were more likely to deliver at home rather than in a hospital or clinic (40%vs 15%; p=0·0007). Personal safety for people with epilepsy was also more problematic; rape rates were 20% among women with epilepsy vs 3% in the control group (p=0·004). Interpretation: People with epilepsy in Zambia have substantially poorer social and economic status than do their peers with non-stigmatised chronic medical conditions. Suboptimum housing quality differentially exposes these individuals to the risk of burns and drowning during a seizure. Vulnerability to physical violence is extreme, especially for women with epilepsy. [Copyright &y& Elsevier]

Purpose: Most people with epilepsy (PWE) reside in developing countries with limited access to medical care. In sub-Saharan Africa (SSA), traditional healers (THs) play a prominent role in caring for PWE, yet little is known about epilepsy care by THs. We conducted a multimethod, qualitative study to better understand the epilepsy care delivered by THs in Zambia. Methods: We conducted focus-group discussions with THs, in-depth semistructured interviews with a well-recognized TH at his place of work, and multiple informal interviews with healthcare providers in rural Zambia. Results: THs recognize the same symptoms that a neurologist elicits to characterize seizure onset (e.g., olfactory hallucinations, jacksonian march, automatisms). Although THs acknowledge a familial propensity for some seizures and endorse causes of symptomatic epilepsy, they believe witchcraft plays a central, provocative role in most seizures. Treatment is initiated after the first seizure and usually incorporates certain plant and animal products. Patients who do not experience further seizures are considered cured. Those who do not respond to therapy may be referred to other healers. Signs of concomitant systemic illness are the most common reason for referral to a hospital. As a consequence of this work, our local Epilepsy Care Team has developed a more collaborative relationship with THs in the region. Conclusions: THs obtain detailed event histories, are treatment focused, and may refer patients who have refractory seizures to therapy to other healers. Under some circumstances, they recognize a role for modern health care and refer patients to the hospital. Given their predominance as care providers for PWE, further understanding of their approach to care is important. Collaborative relationships between physicians and THs are needed if we hope to bridge the treatment gap in SSA. [ABSTRACT FROM AUTHOR]

Purpose: Little data is available regarding the impact of epilepsy on the functional status of people with epilepsy (PWE) in developing countries. In sub-Saharan Africa, limited medical services and social stigmatization subject PWE to substantial physical, psychological and social deprivation. To better delineate the overall burden and distribution of epilepsy-associated disability in sub-Saharan Africa, we assessed the functional status of PWE in a rural, population-based sample and made comparisons to published reports from urban Zimbabwe. Methods: A population-based survey of PWE with epilepsy in rural Zambia utilizing WHO questionnaires. Results: Among 86 PWE in 3 rural Zambian communities, 67% participated in the interviews. Only 62% of PWE were receiving treatment. Five to seven percent of rural PWE reported problems with basic hygiene and 9–14% were unable to fulfill work demands, attend social events or enjoy leisure activities. In contrast, 95% of urban PWE denied any problems with social functioning, work performance or relationships. Compared to the urban population, rural PWE had a greater seizure burden (2.3/month vs. 1/month, p=0.007) and reported more difficulties with activities of daily living, including problem solving (70% vs. 54%, p=0.02), speed of thinking (70% vs. 59%, p=0.02) and relationships with co-workers (68% vs. 26%, p≤0.005). Conclusions: A significant proportion of PWE in rural sub-Saharan Africa report problems fulfilling both social and professional functions. These results also suggest that rural PWE may have poorer functional status than their urban counterparts. [Copyright &y& Elsevier]

Summary: Purpose: Previous research suggests that seizure freedom may be necessary to improve health-related quality of life (HRQOL) for epilepsy surgery patients, but little is known regarding the seizure-frequency reduction needed to improve HRQOL among medically treated individuals. Methods: With data from 134 adults with refractory complex partial seizures participating in a randomized controlled antiepileptic drug (AED) trial, we compared the change in HRQOL across groups having different levels of change in seizure frequency: 100%, 75–99%, 50–74% reduction, and 0–50% increase or decrease. Changes over time within each seizure-reduction group also were assessed. HRQOL was measured by the QOLIE-31, QOLIE-89, and SF-36. Results: Subjects who became seizure free reported significantly more positive change than those who did not on the QOLIE-31 and QOLIE-89 overall scores, the QOLIE-89 mental health, physical health, and epilepsy-targeted composites, as well as the SF-36 mental health summary score. Changes over time in overall QOLIE-31 and QOLIE-89 scores were significantly more positive for subjects who achieved seizure freedom (i.e., 100% reduction in seizure frequency) than for those who did not. No significant change in QOLIE-31 and QOLIE-89 overall scores was observed for subjects who did not achieve seizure freedom. Conclusions: In this study, HRQOL improvement occurred primarily among patients who achieved complete seizure freedom. Many AED trials use a 50% seizure-frequency reduction criterion as a trial end point, but measurable impacts of this degree of reduction in seizure frequency on HRQOL in this sample were not observed. These results further support striving for seizure freedom as an epilepsy care goal. [ABSTRACT FROM AUTHOR]

Discusses the barriers to care encountered by both patients with neurologic disease and the medical staff who care for them in Zambia. Care delivery in Zambia; Options for improving care.

Improvements to medical practice and delivery of treatment has been the focus of many international collaborations aiming to address the delivery of appropriate health care in low- and middle-income countries. However, this is compounded by various social, cultural as well as resource allocation issues. This Editorial marks the launch of an article collection on Medicine for Global Health (http://www.biomedcentral.com/bmcmed/series/ medicine_for_global_health), and here, guest editor Gretchen Birbeck discusses the challenges, importance and increasing relevance of global health. [ABSTRACT FROM AUTHOR]

The article offers insights on the findings of the first global enquiry into headache disorders. According to the enquiry, these disorders are ubiquitous, prevalent, and disabling but under-recognized, under-diagnosed and under-treated. It cites poor awareness as one of the barriers to receiving effective health care for people disabled by headache. It contends that a key issue impeding good headache management is lack of education.

Medical and rehabilitative advances increasingly transform management of rare genetic neuromuscular diseases (GNMDs) for children in the global north. Lack of information about GNMDs and related health care needs in sub-Saharan Africa threatens to widen pre-existing health disparities. This is a cross-sectional study of probands enrolling in a study of GNMDs at the University Teaching Hospital in Lusaka, Zambia, a member of the International Consortium for Genomic Medicine in Neuromuscular Disease. Probands/caregivers were interviewed about utilization of medical, rehabilitative, and other support services by a research assistant. A neuromuscular neurologist and/or physiotherapist examined each case and completed an independent questionnaire regarding health service utilization for each proband. Diagnoses were made on available clinical and electrophysiologic data. Molecular findings were unavailable at the time of this analysis. Among 50 probands, 52% were male with median age 12 (absolute range 2 months to 54 years). Motor neuron diseases (n = 16; 32%), muscle disorders (n = 20; 40%), and inherited polyneuropathies (n = 5; 10%) were most common. Six (15%) cases had insufficient clinical data to classify the GNMDs. Outside of primary care, patient/caregiver-reported access to recommended health services (n = 34; 69%) was challenging. Large disparities in current utilization of health care services versus clinician-recommended services are reported. Paradigms to improve access to diagnostics and therapeutic interventions are needed for GNMDs in Zambia. Multidisciplinary clinics may improve access and utilization of needed health services. Qualitative and other research focused on improving referrals, access, and quality of available health services are greatly needed. [ABSTRACT FROM AUTHOR]

Objective To describe the magnitude and variation of the epilepsy treatment gap worldwide. Methods We conducted a systematic review of the peer-reviewed literature published from 1 January 1987 to 1 September 2007 in all languages using PubMed and EMBASE. The purpose was to identify population-based studies of epilepsy prevalence that reported the epilepsy treatment gap, defined as the proportion of people with epilepsy who require but do not receive treatment. Negative binomial regression models were used to assess trends and associations. Findings The treatment gap was over 75% in low-income countries and over 50% in most lower middle- and upper middle-income countries, while many high-income countries had gaps of less than 10%. However, treatment gaps varied widely both between and within countries. They were significantly higher in rural areas (rate ratio, RR: 2.01; 95% confidence interval, CI: 1.40--2.89) and countries with lower World Bank income classification (RR: 1.55; 95% CI: 1.32--1.82). There was no significant trend in treatment gap over time (RR: 0.92; 95% CI: 0.79--1.07). Conclusion There is dramatic global disparity in the care for epilepsy between high- and low- income countries, and between rural and urban settings. Our understanding of the factors affecting the treatment gap is limited; future investigations should explore other potential explanations of the gap. [ABSTRACT FROM AUTHOR]

Abstract: Objective: Zambia suffers from a physician shortage, leaving the provision of care for those with epilepsy to nonphysician health care workers who may not be adequately trained for this task. These individuals are also important community opinion leaders. Our goal in this study was to determine the knowledge, attitudes, beliefs, and practices of these health care workers with respect to epilepsy. Methods: Health care workers in urban and rural districts of Zambia completed a self-administered, 48-item questionnaire containing items addressing demographics, personal experience with epilepsy, social tolerance, willingness to provide care, epilepsy care knowledge, and estimates of others’ attitudes. Analyses were conducted to assess characteristics associated with more epilepsy care knowledge and social tolerance. Results: The response rate was 92% (n =276). Those who had received both didactic and bedside training (P =0.02) and more recent graduates (P =0.007) had greater knowledge. Greater knowledge was associated with more social tolerance (P =0.005), but having a family member with epilepsy was not (P =0.61). Health care workers were generally willing to provide care to this patient population, but ∼25% would not allow their child to marry someone with epilepsy and 20% thought people with epilepsy should not marry or hold employment. Respondents reported that people with epilepsy are feared and/or rejected by both their families (75%) and their community (88.8%). Conclusions: Knowledge gaps exist particularly in acute management and recognition of partial epilepsy. More recent graduates were more knowledgeable, suggesting that curriculum changes instituted in 2000 may be improving care. Health care workers expressed both personal and professional reservations about people with epilepsy marrying. In addition to improving diagnosis and treatment skills, educational programs must address underlying attitudes that may worsen existing stigmatizing trends. [Copyright &y& Elsevier]

To evaluate the odds of vitamin B12 and folate deficiencies among Zambian clinic attendees with distal symmetric polyneuropathy (DSP) and age, sex, and HIV matched controls. Cases were adults from clinics in urban/peri-urban Zambia. Controls were enrolled among persons not seeking personal medical care, such as a caregiver or person collecting antiretrovirals without a medical complaint. Participants underwent structured interviews, physician examination, and assessments of complete blood count, renal and liver profiles, serum vitamin B12 and folate, erythrocyte folate, plasma total homocysteine and methylmalonic acid. HIV testing and CD4 counts were performed when appropriate. Among 107 consenting matched case-control pairs, 65% were female, 52% HIV positive, with mean age of 47.6 (SD 13.5) years. Among HIV positive participants, mean CD4 count was 484 (SD 221) and 482 (SD 236) for cases and controls, respectively (p =.93). DSP symptoms and severity did not differ by HIV status (p's > 0.05). Height, history of tuberculosis treatment, alcohol use, education, asset index, dietary diversity, and nutritional supplement use did not differ between cases and controls (p's > 0.05). DSP cases had at least 3:1 odds of having low serum folate (p =.0001), severely low erythrocyte folate (p =.014), and elevated total homocysteine (p =.001) levels compared to controls. Markers of vitamin B12 deficiency were not associated with case status (p's > 0.05). Markers of folate deficiency are highly associated with DSP among Zambian clinic attendees. Future studies should consider a broader range of comorbid nutritional deficiencies, and strategies for interventions. • Folate deficiency is associated with neuropathy in adult clinic attendees in Zambia. • Vitamin B12 deficiency is also common, but was not associated with neuropathy. • Future studies should assess other vitamin deficiencies associated with neuropathy. • More research on nutritional neurologic morbidity in similar settings is warranted. [ABSTRACT FROM AUTHOR]

Background: The success of medicine in the treatment of patients brings with it new challenges. More people live on to suffer from functional, chronic or multifactorial diseases, and this has led to calls for more complex analyses of the causal determinants of health and illness.Methods: Philosophical analysis of background assumptions of the current paradigmatic model.Results: While these factors do not require a radical paradigm shift, they do give us cause to develop a new narrative, to add to existing narratives that frame our thinking about medical care. In this paper we argue that the increased focus on lifestyle and shared decision making requires a new narrative of agency, to supplement the narrative of "the patient". This narrative is conceptually linked to the developing philosophy of person-centred care.Conclusions: If patients are seen also as "agents" this will result in a substantial shift in practical decisions: The development and adoption of this narrative will help practitioners work with patients to their mutual benefit, harnessing the patients' motivation, shifting the focus from treatment to prevention and preventing unnecessary and harmful treatments that can come out of our preoccupation with the patient narrative. It will also help to shift research efforts, conceptual and empirical, from "treating" and "battling" diseases and their purported "mechanisms" to understanding complex contributing factors and their interplay. [ABSTRACT FROM AUTHOR]