Abstract
Klein A, Berger TC, Hapfelmeier A, Schaffert M, Matuja W, Schmutzhard E, Winkler AS. Epilepsy Behav. 2023;139:109030. doi:10.1016/j.yebeh.2022.109030
Background: With an estimated lifetime prevalence of epilepsy of 7.6 per 1,000 people, epilepsy represents one of the most common neurological disorders worldwide, with the majority of people with epilepsy (PWE) living in low-income and middle-income countries (LMICs). Adequately treated, up to 70% of PWE will become seizure-free, however, as many as 85% of PWE worldwide, mostly from LMICs, do not receive adequate treatment. Objective: To assess the impact of the presence of a neurologist on the management of PWE in Tanzania. Methods: Two epilepsy clinics in rural Tanzania, one continuously attended by a neurologist, and one mainly attended by nurses with training in epilepsy and supervised intermittently by specialist doctors (neurologists/psychiatrists) were comparatively analyzed by multivariable linear and logistic regression models with regard to the outcome parameters seizure frequency, the occurrence of side effects of antiepileptic medication and days lost after a seizure. Results: The presence of a neurologist significantly reduced the mean number of seizures patients experienced per month by 4.49 seizures (p < 0.01) while leading to an increase in the occurrence of reported side effects (OR: 2.15, p = 0.02). Conclusion: The presence of a neurologist may play a substantial role in reducing the burden of the disease of PWE in LMICs. Hence, specialist training should be encouraged, and relevant context-specific infrastructure established.
Commentary
Epilepsy is a global health concern affecting 50 million people. 1 The most substantial burden is experienced in the low- and middle-income countries (LMIC), where 80% of people with epilepsy (PWE) reside and most lack access to optimal care. 1 The World Health Organization has recognized epilepsy as a public health priority and established the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders for the period of 2022 to 2031, which was endorsed by the World Health Assembly in May 2022. 1
In LMIC, epilepsy-associated social stigma and the resulting loss of productivity worsen the already complex socioeconomic dynamic. Sub-Saharan Africa has a 68% epilepsy treatment gap, compared to less than 10% in high-income countries. 2 Rural Tanzania, in particular, has been noted to have a 40% to 86% treatment gap as per three studies performed between 2003 and 2009. 3 -5 In addition, Tanzania is one of the few African regions affected by nodding epilepsy, an otherwise rare but prevalent epilepsy in these parts with high seizure frequency and secondary to Onchocerciasis. 6
In the background of such a treatment gap and the period mentioned above, Klein et al performed a comparative observational study to investigate the impact of continuous neurologist care at two rural hospital-based clinics: Haydom Lutheran Epilepsy Clinic (HLEC) and Mahenge Epilepsy Clinic (MEC). 7 Both clinics had the support of nurses with epilepsy knowledge, while MEC also had a psychiatrist. Haydom Lutheran Epilepsy Clinic mostly received continuous neurologist care, while MEC received intermittent services from a neurologist (usually once a year). The study aimed to determine differences between the two epilepsy care models in seizure frequency, days lost after seizures, and occurrence of side effects with anti-seizure medication (ASM) treatment. In this resource-poor setting, available ASM treatment was limited to a small number of first-generation ASMs like phenytoin, phenobarbital, carbamazepine, and valproic acid.
The authors used a previously described modified clinical seizure classification system that integrated risk factors, age of seizure onset, and signs of focal seizures. 8 The final analysis included 674 PWE across both clinics. A staggering 52% had a positive family history of seizures, and 22% had a positive history of complications during the pre-, peri- or postnatal period. Nearly half the PWE had previously tried traditional therapies. Multivariable linear regression analysis revealed that PWE receiving continuous neurologist care experienced 4.5 seizures less per month and a higher likelihood of side effects than those with intermittent care. However, PWE in the continuous group lost more days after a seizure, which was not statistically significant.
Limitations to the study included data collection bias, patient recall bias, the presence of nodding syndrome with intrinsic high seizure frequency in only the intermittent care group, and placebo and nocebo effects. The lower seizure frequency and higher occurrence of side effects in the continuous neurologist group could be secondary to more ASM adherence; yet, adherence data were not captured, and serum ASM levels were unavailable for objective analysis. Carbamazepine, the commonest ASM in the continuous neurologist group, was used at a higher mean dose, potentially leading to more seizure reduction and side effects.
Despite the limitations, the study strongly suggests that a continuous neurologist’s presence leads to better patient outcomes even when the non-neurologist healthcare providers are specialty-trained and have intermittent neurologist supervision. This finding challenges the prevalent model of task sharing or shifting for global health, where nonphysician healthcare providers are trained and supervised to provide high-quality patient care without a physician. Task shifting is based on the principle of rational redistribution of tasks among health workforce teams. 9 It has been reported mainly in the management of communicable diseases to decrease cost and increase efficiency. 10 Recent qualitative data from Ethiopia suggests that task shifting can improve seizures in epilepsy. 11 A task shifting model with tasks shifted from psychiatrists and other mental health specialists (belonging to the Partners in Health network) to primary care nurses in Rwanda improved the basic care of PWE. 12 Continuous specialty neurology care is often not financially or practically feasible in many parts of the world. Thus, new and innovative models are required for task sharing, education, and continuous specialty care. 13
Telemedicine can enable a continuous or semi-continuous presence of a neurologist in LMIC. The usual barrier in resource-poor settings is the lack of fast and reliable internet connections. However, emerging satellite internet technologies such as Starlink are increasingly becoming available worldwide, including in Nigeria and Rwanda (which borders Tanzania). 14 It is still expensive for personal household use but might be affordable for a hospital. Future studies could assess the feasibility and effectiveness of telemedicine as a means to provide continuous or frequent neurologist availability in rural areas of LMICs. While there has been considerable development in telemedicine use for medical education and patient care in Sub-Saharan Africa, many initiatives have yet to progress beyond pilot projects. 15
Given the global burden of epilepsy, The International Bureau for Epilepsy (IBE) recently introduced its 2022-2026 Strategic Plan, proposing an ambitious Epilepsy 100-90-80-70 cascade target for the next decade. This plan aspires to improve the quality of life for 100% of PWE, increase awareness to 90%, provide 80% with anti-seizure medications (ASMs), and achieve satisfactory seizure control in 70% of treated PWE. 16 Studies such as those by Klein et al will be paramount in helping the global epilepsy community address the epilepsy treatment gap and achieve these goals.
