[Quality of life in people with epilepsy: beyond seizures]. / Calidad de vida en personas con epilepsia. Más allá de las crisis.

INTRODUCTION: People with epilepsy have multiple barriers to recovery: access to medication, comorbidities and social problems. The aim of this study is to determine psychosocial factors associated with the perception of quality of life in people with epilepsy in the department of Bolivar, Colombia, in the year 2022. SUBJECTS AND METHODS: Descriptive cross-sectional study, correlational, with a sample stratified with a margin of error of 5%, according to the calculation of the average number of people treated for epilepsy in Colombia. 174 people participated with a mean age of 39.55 years, 50% men and 50% women. An instrument was used that determined sociodemographic data, quality of life (Quality of Life in Epilepsy Inventory-10), adherence to treatment (Morisky test), self-care behaviors, perception of disability and provision of health services. All the instruments showed a Cronbach's Alpha greater than 0.686 for this population. RESULTS: 21.3% had focal onset epilepsy; 41% with generalized epilepsy without focal onset; 18.4% with focal onset that generalized; 12.6% did not know their type of epilepsy; and 6.3% reported that they were not informed about their type of epilepsy. Based on correlations, an explanatory model of quality of life is shown, with pillars such as drug adherence, self-care habits, time without seizures, and perceived disability. CONCLUSIONS: Although time without seizures is a fundamental element in recovery, living conditions and mental health problems are key elements to achieve a better quality of life in epilepsy.

TITLE: Calidad de vida en personas con epilepsia. Más allá de las crisis.Introducción. Las personas con epilepsia tienen múltiples barreras para recuperarse: acceso a medicamentos, comorbilidades y problemas sociales. El objetivo del presente estudio es determinar factores psicosociales asociados con la percepción de la calidad de vida en personas con epilepsia en el departamento de Bolívar, Colombia, en el año 2022. Sujetos y métodos. Estudio descriptivo de corte transversal, correlacional, con un muestreo estratificado con un margen de error del 5%, según el cálculo del promedio de personas atendidas por epilepsia en Colombia. Participaron 174 personas con una edad media de 39,55 años, un 50% hombres y un 50% mujeres. Se usó un instrumento que determinó datos sociodemográficos, calidad de vida (Quality of Life in Epilepsy Inventory-10), adhesión al tratamiento (test de Morisky), conductas de autocuidado, percepción de incapacidad y prestación de los servicios de salud. Todos los instrumentos mostraron un alfa de Cronbach superior a 0,686 para esta población. Resultados. El 21,3% contó con epilepsia de inicio focal; el 41%, con epilepsia generalizada sin inicio focal; el 18,4%, con epilepsia de inicio focal que generaliza; el 12,6% desconocía su tipo de epilepsia; y el 6,3% manifestó que no fue informado sobre su tipo de epilepsia. Basándose en correlaciones, se muestra un modelo explicativo de calidad de vida, con pilares como la adhesión farmacológica, los hábitos de autocuidado, el tiempo sin crisis y la incapacidad percibida. Conclusiones. Aunque el tiempo sin crisis constituye un elemento fundamental en la recuperación, las condiciones de vida y los problemas de salud mental constituyen elementos claves para lograr una mejor calidad de vida en epilepsia.

Calidad de vida en personas con epilepsia. Más allá de las crisis / Quality of life in people with epilepsy: beyond seizures

Introducción: Las personas con epilepsia tienen múltiples barreras para recuperarse: acceso a medicamentos, comorbilidades y problemas sociales. El objetivo del presente estudio es determinar factores psicosociales asociados con la percepción de la calidad de vida en personas con epilepsia en el departamento de Bolívar, Colombia, en el año 2022. Sujetos y métodos: Estudio descriptivo de corte transversal, correlacional, con un muestreo estratificado con un margen de error del 5%, según el cálculo del promedio de personas atendidas por epilepsia en Colombia. Participaron 174 personas con una edad media de 39,55 años, un 50% hombres y un 50% mujeres. Se usó un instrumento que determinó datos sociodemográficos, calidad de vida (Quality of Life in Epilepsy Inventory-10), adhesión al tratamiento (test de Morisky), conductas de autocuidado, percepción de incapacidad y prestación de los servicios de salud. Todos los instrumentos mostraron un alfa de Cronbach superior a 0,686 para esta población. Resultados: El 21,3% contó con epilepsia de inicio focal; el 41%, con epilepsia generalizada sin inicio focal; el 18,4%, con epilepsia de inicio focal que generaliza; el 12,6% desconocía su tipo de epilepsia; y el 6,3% manifestó que no fue informado sobre su tipo de epilepsia. Basándose en correlaciones, se muestra un modelo explicativo de calidad de vida, con pilares como la adhesión farmacológica, los hábitos de autocuidado, el tiempo sin crisis y la incapacidad percibida. Conclusiones: Aunque el tiempo sin crisis constituye un elemento fundamental en la recuperación, las condiciones de vida y los problemas de salud mental constituyen elementos claves para lograr una mejor calidad de vida en epilepsia.(AU)

Introduction: People with epilepsy have multiple barriers to recovery: access to medication, comorbidities and social problems. The aim of this study is to determine psychosocial factors associated with the perception of quality of life in people with epilepsy in the department of Bolívar, Colombia, in the year 2022. Subjects and methods: Descriptive cross-sectional study, correlational, with a sample stratified with a margin of error of 5%, according to the calculation of the average number of people treated for epilepsy in Colombia. 174 people participated with a mean age of 39.55 years, 50% men and 50% women. An instrument was used that determined sociodemographic data, quality of life (Quality of Life in Epilepsy Inventory-10), adherence to treatment (Morisky test), self-care behaviors, perception of disability and provision of health services. All the instruments showed a Cronbach’s Alpha greater than 0.686 for this population. Results: 21.3% had focal onset epilepsy; 41% with generalized epilepsy without focal onset; 18.4% with focal onset that generalized; 12.6% did not know their type of epilepsy; and 6.3% reported that they were not informed about their type of epilepsy. Based on correlations, an explanatory model of quality of life is shown, with pillars such as drug adherence, self-care habits, time without seizures, and perceived disability. Conclusions: Although time without seizures is a fundamental element in recovery, living conditions and mental health problems are key elements to achieve a better quality of life in epilepsy.(AU)

Resultados quirúrgicos a largo plazo en pacientes con epilepsia fármaco-resistente del lóbulo temporal sin anormalidades histológicas / Long-term surgical outcomes in patients with drug-resistant temporal lobe epilepsy and no histological abnormalities

Introducción: Los reportes de los resultados quirúrgicos en los pacientes con epilepsia fármaco-resistente del lóbulo temporal sin anormalidades histológicas son escasos. Métodos: Fueron revisados retrospectivamente los datos de los pacientes con epilepsia del lóbulo temporal tratados con lobectomía temporal anterior con amígdalo-hipocampectomía que no presentaban alteraciones en los estudios histopatológicos. Fueron analizadas las variables: edad, género, edad al inicio de las crisis epilépticas, edad al momento de la cirugía, tiempo de evolución de la epilepsia desde el diagnóstico hasta la fecha de la cirugía, periodo de seguimiento y clasificación según la escala de Engel. Resultados: De una base de datos de 256 lobectomías temporales, fueron identificados 21 pacientes que cumplieron los criterios de inclusión. El promedio de edad a la cual se realizó el diagnóstico de epilepsia fue 8,3 años, al momento de la cirugía fue 28,6 años y de tiempo transcurrido desde el diagnóstico hasta la cirugía fue 20,2 años. Tras un seguimiento promedio de 6,5 años, el 90,5% obtuvo resultados favorables (clases i y ii ) y el 42,9% estaba libre de crisis (clase i A). Tras el análisis comparativo de las variables estudiadas, solo existieron diferencias estadísticamente significativas en la edad de inicio de las crisis, siendo inferior en los pacientes que obtuvieron resultados favorables. Conclusión: Aunque en la gran mayoría de los pacientes los resultados quirúrgicos a largo plazo fueron favorables, la proporción de pacientes libres de crisis es inferior a la de los pacientes con epilepsia lesional y comparables con lo reportado previamente en la literatura (AU)

Introduction: Reports on surgical outcomes in patients with drug-resistant temporal lobe epilepsy without histological abnormalities are scarce. Methods: Retrospective review of data from patients with drug-resistant temporal lobe epilepsy and no histopathological alterations who underwent anterior mesial temporal lobectomy. We analysed the following variables: age, sex, age at seizure onset, age at surgery, time elapsed between diagnosis and the date of the surgery, follow-up time, and classification according to the Engel rating scale. Results: From a database of 256 temporal lobectomies, 21 were identified as meeting the inclusion criteria. The average age upon diagnosis of epilepsy was 8.3 years and average age at time of surgery was 28.6 years. The mean time elapsed between diagnosis and surgery was 20.2 years. After a mean follow-up of 6.5 years, 90.5% of the patients showed favourable outcomes (classes i and ii ) and 42.9% were seizure-free (class IA). Comparative analysis of the variables revealed that average age at seizure onset was the only statistically significant difference between groups, with age at onset being lower in patients with favourable outcomes. Conclusion: Although long-term surgical outcomes were favourable for a large majority of patients, the percentage of seizure-free patients is lower than in patients with lesional epilepsy and comparable to that previously reported in the literature (AU)

Long-term surgical outcomes in patients with drug-resistant temporal lobe epilepsy and no histological abnormalities.

INTRODUCTION: Reports on surgical outcomes in patients with drug-resistant temporal lobe epilepsy without histological abnormalities are scarce. METHODS: Retrospective review of data from patients with drug-resistant temporal lobe epilepsy and no histopathological alterations who underwent anterior mesial temporal lobectomy. We analysed the following variables: age, sex, age at seizure onset, age at surgery, time elapsed between diagnosis and the date of the surgery, follow-up time, and classification according to the Engel rating scale. RESULTS: From a database of 256 temporal lobectomies, 21 were identified as meeting the inclusion criteria. The average age upon diagnosis of epilepsy was 8.3 years and average age at time of surgery was 28.6 years. The mean time elapsed between diagnosis and surgery was 20.2 years. After a mean follow-up of 6.5 years, 90.5% of the patients showed favourable outcomes (classes i and ii) and 42.9% were seizure-free (class IA). Comparative analysis of the variables revealed that average age at seizure onset was the only statistically significant difference between groups, with age at onset being lower in patients with favourable outcomes. CONCLUSION: Although long-term surgical outcomes were favourable for a large majority of patients, the percentage of seizure-free patients is lower than in patients with lesional epilepsy and comparable to that previously reported in the literature.

Corpus callosotomy in Colombia and some reflections on care and research among the poor in developing countries.

The authors present the results of a series of corpus callosotomies (CCS) in 97 patients performed from 1989 to 1997 at the Hospital Neurologico of the Liga Colombiana Contra La Epilepsia, Cartagena, Colombia. This study demonstrates the feasibility of performing these procedures in the developing world and analyzes the outcome and cost of treatment. Patients with medically intractable secondarily generalized epilepsy, bilateral nonfocal epileptic electroencephalogram (EEG), and absence of progressive encephalopathy were accepted as candidates (patients aged 0-30 years; 62 children, 19 girls and 43 boys, with mean age at surgery of 7.9 years; 35 adults, 19 women and 16 men, with mean age at surgery of 25.8 years). Preoperatively, the mean seizure frequency was 12.1 per day, or 364 per month (range, 0.06-200 per day, 1.8-6000 per month). Before surgery, 40% of patients were classified with generalized tonic-clonic seizures of different etiologies, or cryptogenic seizures; 36% had mixed seizures; 19% had Lennox-Gastaut Syndrome; and 5% had West Syndrome. Usually, routine EEG, computed tomography, and clinical findings sufficed for the surgical decision. The standard microsurgical technique performed was an anterior two-thirds CCS by the same surgeon under general anesthesia. In five cases, an additional frontal lobe excision after electrocorticography and subdural electrode monitoring was carried out in the same session. The results were evaluated after a mean follow-up of 35 months (range, 12-28). Two thirds of patients became seizure-free or were left with none or some disabling seizures. AED medication was eased slightly after surgery. The complication rate was low. The patients underwent postoperative psychosocial studies and neuropsychological rehabilitation and showed tendencies toward improvement. The direct cost of CCS in U.S. dollars (US$) ranged between 3,137 and 3,995 depending on the preoperative studies. Thus, CCS is well suited for selected patients in developing countries. Thus far, implantation of a vagus nerve stimulator has exceeded our economic possibilities in treating similar patients. Some reflections on care and research among epilepsy patients in developing countries are discussed.

Comparison of the epilepsy surgery programs in Cartagena, Colombia, and Zürich, Switzerland.

The organization, financing, productivity, quality of work, and cost-effectiveness of the Epilepsy Center in Cartagena, Colombia, were studied and compared with the epilepsy surgery program at the University Hospital Zürich, Switzerland. During a 2-month visit, one of the authors (I.T.) evaluated the center in Cartagena as a welfare institution and evaluated its epilepsy surgery program. The postoperative results of the Cartagena program were compared with those reported at the Second International Palm Desert Conference 1992, which revealed a similar rate of postoperative seizure control in temporal lobe epilepsy, slightly inferior results with hemispherectomy, and slightly better results with anterior callosotomy. A comparison between the two epilepsy centers showed that pre and postoperative antiepileptic drug treatment is more restricted in Colombia because of high costs. Although important diagnostic tools such as electroencephalography, seizure monitoring, neuropsychology, computed tomography, and magnetic resonance imaging are available in both centers, the Zürich program also has access to positron emission tomography, single photon emission computed tomography, magnetic resonance spectroscopy, and intracarotid and selective amobarbital tests. The postoperative seizure outcome is similar in surgical temporal lobe epilepsy patients (temporal lobectomy series, Cartagena; selective amygdalohippocampectomy series, Zürich). The comparison of direct costs of epilepsy surgery in Cartagena and Zürich showed that for the average patient undergoing epilepsy surgery in Cartagena, the cost is 5.5% of that in Zürich. This study presents evidence that epilepsy surgery is an inexpensive and efficient treatment option for epilepsy patients in developing countries. Epilepsy surgery in developing countries may even be considered at an early stage in patients who cannot afford the costs of lifetime medical treatment but can afford the one-time cost of a surgical treatment.