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CC BY 4.0 · Arq Neuropsiquiatr 2023; 81(08): 725-733
DOI: 10.1055/s-0043-1769125
Original Article

The challenges to control epilepsy in an isolated indigenous tribe in Brazil's Amazon: 15 years of follow-up

Os desafios do controle de epilepsia em indígenas de uma tribo isolada da Amazônia: 15 anos de seguimento
Marcos Manoel Honorato 
1   Universidade Federal de São Paulo, Escola Paulista de Medicina, Departamento de Neurologia e Neurocirurgia, São Paulo SP, Brazil.
2   Universidade do Estado do Pará, Centro de Ciências Biológicas e da Saúde, Departamento de Saúde Integrada, Santarém PR, Brazil.
,
Renata Carvalho Cremaschi 
1   Universidade Federal de São Paulo, Escola Paulista de Medicina, Departamento de Neurologia e Neurocirurgia, São Paulo SP, Brazil.
,
Fernando Morgadinho Santos Coelho 
1   Universidade Federal de São Paulo, Escola Paulista de Medicina, Departamento de Neurologia e Neurocirurgia, São Paulo SP, Brazil.
3   Universidade Federal de São Paulo, Escola Paulista de Medicina, Departamento de Psicobiologia, São Paulo SP, Brazil.
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Abstract

Background Epilepsy is a common neurological disease that affects people all over the world, but it is rarely described in indigenous peoples.

Objective To study the epilepsy characteristics and risk factors for seizure control in people from an isolated indigenous population.

Methods This is a retrospective and historical cohort study conducted from 2003 to 2018 (15 years), at a neurology outpatient clinic, of 25 Waiwai tribes' indigenous individuals with epilepsy, inhabitants of an isolated forest reserve in the Amazon. Clinical aspects, background, comorbidities, exams, treatment, and response were studied. Factors that impacted seizure control over 24 months were identified using Kaplan-Meier curves and Cox and Weibull regression models.

Results The majority of cases started in childhood, with no difference regarding gender. Focal epilepsies were predominant. Most patients had tonic-clonic seizures. A quarter of them had a family history, and 20% had referred febrile seizures. There was intellectual disability in 20% of patients. Neurological examination and psychomotor development were altered in one third of the participants. The treatment controlled 72% of the patients (monotherapy in 64%). Phenobarbital was the most prescribed anti-seizure medication, followed by carbamazepine and valproate. The most relevant factors that impacted seizure control over time were abnormal neurological exam and family history.

Conclusion Family history and abnormal neurological exam were predicted risk factors for refractory epilepsy. Even in an isolated indigenous tribe, the partnership between the indigenous people and the multidisciplinary team ensured treatment adherence. The public healthcare system must guarantee modern anti-seizure medications, mainly for this vulnerable population, which has no other source of treatment.

Resumo

Antecedentes A epilepsia é uma doença neurológica que afeta povos do mundo todo, mas raramente é descrita em povos indígenas.

Objetivos Estudar as características da epilepsia e os fatores de risco para o controle das crises em pessoas de uma população indígena isolada.

Métodos Este é um estudo de coorte retrospectivo e histórico, conduzido de 2003 a 2018 (15 anos) no ambulatório de neurologia, de 25 indígenas Waiwai com epilepsia, habitantes de uma reserva florestal na Amazônia. Aspectos clínicos, antecedentes, comorbidades, exames, tratamento e resposta foram estudados. Identificou-se os fatores que afetaram o controle das crises ao longo de 24 meses usando curvas de Kaplan-Meier e modelos de regressão de Cox e Weibull.

Resultados A maioria dos casos teve início na infância, sem diferença quanto ao gênero. Predominavam as epilepsias focais. A maioria dos pacientes apresentava crises tônico-clônicas. Um quarto deles tinha história familiar e 20% referiram convulsões febris. Vinte por cento dos pacientes apresentava deficiência intelectual. Um terço tinha exame neurológico e desenvolvimento psicomotor alterados. O tratamento controlou 72% dos pacientes (monoterapia em 64%). Fenobarbital foi o medicamento mais prescrito, seguido por carbamazepina e valproate, e os fatores que mais impactaram o controle das crises ao longo do tempo foram exame neurológico anormal e história familiar.

Conclusão História familiar e exame neurológico anormal foram fatores de risco preditores para epilepsia refratária. Mesmo em uma tribo indígena isolada, a parceria entre os indígenas e a equipe multidisciplinar garantiu a adesão ao tratamento. O sistema público de saúde deve garantir medicamentos modernos anticrise, principalmente para essa população vulnerável, que não tem outra fonte de tratamento.

Keywords

Epilepsy - Seizures - Indigenous Peoples - Amazonian Ecosystem

Palavras-chave

Epilepsia - Convulsões - Povos Indígenas - Ecossistema Amazônico

Authors' Contributions

MMH: statistical analysis; MMH, RCC, FMSC: research idea, study design, data acquisition, interpretation; drafting, manuscript revision.


Support

This work was supported by the Hospital São Paulo and the Department of Neurology and Neurosurgery, Federal University of São Paulo, Brazil.




Publication History

Received: 23 November 2022

Accepted: 18 March 2023

Article published online:
04 July 2023

© 2023. Academia Brasileira de Neurologia. This is an open access article published by Thieme under the terms of the Creative Commons Attribution 4.0 International License, permitting copying and reproduction so long as the original work is given appropriate credit (https://creativecommons.org/licenses/by/4.0/)

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