Auro Mauro Azevedo

Validity and reliability of the Portuguese version of the quality of life in epilepsy inventory (QOLIE-31) for Brazil

PURPOSE We report the cultural adaptation and psychometric properties of the Quality of Life in Epilepsy-31 Inventory (QOLIE-31) for the Portuguese language and Brazilian culture. METHODS This study involved 150 outpatients: 50 presurgical patients with refractory temporal lobe epilepsy (TLE) related to mesial temporal sclerosis (MTS), 50 patients with juvenile myoclonic epilepsy (JME), and 50 seizure-free patients with TLE. They completed the QOLIE-31, Nottingham Health Profile (NHP), Beck Depression Inventory (BDI), and Adverse Events Profile (AEP) and underwent a neuropsychological evaluation (NE). Internal consistency reliability, interrater and test-retest reliability, and construct validity were assessed. RESULTS QOLIE-31 mean scores were 33.1 (Social Function), 68.9 (Overall Quality of Life), 56.5 (Seizure Worry), 64.1 (Emotional Well-Being), 63.7 (Energy/Fatigue), 38.9 (Cognitive Function), and 49.7 (Medication Effects). Internal consistency was high (Cronbachs alpha), as were the associations between QOLIE-31 and the BDI, NHP, AEP, and NE. CONCLUSION The Portuguese/Brazilian version of the QOLIE-31 inventory showed good reliability, validity, and construct validity.

The Portuguese version of the Epilepsy Surgery Inventory (ESI-55): Cross-cultural adaptation and evaluation of psychometric properties

The purpose of this study was to develop a Portuguese version of the Epilepsy Surgery Inventory (ESI-55) and to assess its psychometric properties. Sixty patients with temporal lobe epilepsy related to unilateral mesial temporal sclerosis who underwent presurgical evaluation at the Universidade Federal de São Paulo (UNIFESP) formed the sample for this study. The psychometric properties of the ESI-55 included: reliability, validity, and responsiveness. Internal consistency was high in all domains (Cronbachs alpha ranging from 0.76 for Social Function to 0.88 for Physical Function) except Overall Quality of Life (alpha=0.45). Test-retest reliability after 1 week was good, with the intraclass correlation coefficient ranging from 0.79 (Energy/Fatigue) to 0.92 (Role Limitations due to Emotional Problems). Interrater reliability ranged from 0.84 (Cognitive Function) to 0.94 (Role Limitations due to Physical Problems). For construct validity, we verified a high correlation between the ESI-55 and Health Assessment Questionnaire-8 for the Physical Function domain (Pearson linear correlation=-0.84), and a moderate correlation for the Pain domain (P=-0.58), but for the other subscales no correlation was detected. Beck Depression Inventory and ESI-55 domains were highly statistically correlated (ANOVA: P<0.005), but there was no association of the Cognitive Function and Role Limitations due to Memory Problems subscales with neuropsychological evaluation (Pearson coefficient: P>0.05). With respect to demographic characteristics, a statistically significant correlation was observed for the variable educational level (Student t, P<0.005) and ESI-55 scores. There was a high correlation between seizure frequency and ESI-55 domains for clinical variables (ANOVA, P<0.005). Surgical treatment in this series improved health-related quality of life in the seizure-free group in three domains--Health Perception (1.24), Emotional Well-Being (1.32), and Energy/Fatigue (1.48)-as reflected by the standard response mean and the effect size of the sample. Our results support the psychometric properties of the Portuguese version of the ESI-55 as a measure of health-related quality of life.

Validity and reliability of the Portuguese-Brazilian version of the Quality of Life in Epilepsy Inventory-89.

OBJECTIVE The purpose of this article was to report the translation of the Quality of Life in Epilepsy Inventory-89 (QOLIE-89) into a Portuguese-Brazilian version and evaluate its reliability and validity. METHODS This study involved 105 outpatients: 54 patients with refractory temporal lobe epilepsy (TLE) with mesial temporal sclerosis (MTS) and 51 with juvenile myoclonic epilepsy (JME). Reliability and test-retest reliability were assessed. Relationships between QOLIE-89 domains and other questionnaires (Nottingham Health Profile, Beck Depression Inventory, Adverse Event Profile, Neuropsychological Evaluation), and external measures such as demographic and clinical variables were analyzed to examine construct validity. RESULTS Internal consistency (Cronbachs alpha=0.73-0.92) and test-retest reliability (intraclass correlation coefficient=0.60-0.84) for individual domains were acceptable. For construct validity, we verified high correlations between the QOLIE-89 and the Nottingham Health Profile, Beck Depression Inventory, Adverse Event Profile, and Neuropsychological Evaluation. For clinical characteristics, the patients with juvenile myoclonic epilepsy had better quality-of-life scores on 11 of 17 QOLIE-89 subscales compared with patients with temporal lobe epilepsy (P<0.05). CONCLUSION These results support the reliability and validity of the Portuguese-Brazilian translation of QOLIE-89.

Employment and quality of life in mesial temporal lobe epilepsy with hippocampal sclerosis: is there a change after surgical treatment?

PURPOSE: The aim of this study was to evaluate in patients with mesial temporal lobe epilepsy (MTLE) with hippocampal sclerosis (HS): (1) employment patterns before and three years after epilepsy surgery and their impact in Quality of Life (QOL); (2) demographic and clinical variables associated with employment. METHODS: Data from 58 patients with diagnosis of refractory MTLE with HS who had corticoamygdalo-hippocampectomy were analyzed. The subjects answered to Brazilian validated version of the Epilepsy Surgery Inventory (ESI-55) before, and three years after surgery. In a semi-structured interview, sociodemographic and clinical characteristics were obtained. Changes in employment after surgery were classified in one of the three categories: (i) improvement status: those who were unemployed, no-formal employed, students, housewives and subjects who have never worked to employed category; (ii) unchanged status: no change in occupation; this category included subjects who were employed before and after the surgery, housewives, students, and the group who remained unemployed, receiving ill-health benefits or retired after the surgical treatment; and (iii) worsened status: loss of employment. RESULTS: Employment status did not show any significant change after surgery: in 51(87.9%) it remained unchanged, in six (10.3%) it improved, and one patient (1.7%), who was employed before the surgery, retired after that. In a subgroup of 22 patients employed after surgery, ten (45.5%) were seizure-free, seven (31.8%) had only rare auras, and five (22.7%) had seizures. In the group of improvement, 12 patients (70.5%) had no-formal employment and five (29.5%) had a formal job before surgery. After three years, 14 (63.6%) of 22 subjects were formally employed. Our data suggested that the employability was strongly correlated (p<0.05) with a positive perception of health-related quality of life measured by ESI-55, before and after surgical evaluation. CONCLUSION: Our study demonstrated in a homogeneous group of MTLE with HS, a modest, but positive relationship between surgical outcome and work gain, and that QOL had strong correlation with the fact of being employed.

Neuropsychological assessment and quality of life in patients with refractory temporal lobe epilepsy related to hippocampal sclerosis

INTRODUCAO: Epilepsia e um disturbio decorrente de atividade anormal de um grupo de neuronios, causando grande impacto no processo cognitivo e comportamental do individuo. A epilepsia do lobo temporal (ELT) e o tipo de epilepsia parcial mais comum e a esclerose hipocampal (EH) o substrato neuropatologico mais frequentemente encontrado em pacientes com epilepsia refrataria. Pessoas com ELT apresentam declinio cognitivo que pode ser determinado pela localizacao das descargas e da lesao. E, alem disso, tambem apresentam limitacao na qualidade de vida (QV) pelas crises diarias. OBJETIVO: Avaliar a relacao entre a avaliacao neuropsicologica e QV com a hipotese de que pacientes com piores resultados na primeira tem pior QV determinada pelo QOLIE-31. RESULTADOS: Quanto a frequencia de crises, 23 pacientes (46%) tiveram ate 5 crises, 20 (40%) de 6 a 10 e 7 (14%) mais de 10 por mes. Quanto ao tipo de crises, 5 (10%) apresentaram apenas auras, 37 (74%) crises parciais complexas e 8 (16%) crises parciais complexas com generalizacao secundaria. Os resultados da avaliacao neuropsicologica tiveram correlacao positiva com os dominios do QOLIE-31. Nos dominios Aspectos Sociais com testes de funcao executiva, Preocupacao com as Crises e Qualidade de Vida Global com testes de memoria verbal e Bem-estar Emocional com os testes utilizados para calculo do QI. CONCLUSAO: Pessoas com epilepsia tem grande impacto na QV nao apenas pelas limitacoes causadas pelas crises diarias, mas tambem pelo que estas causam em suas funcoes cognitivas. ELT e um exemplo de como uma epilepsia refrataria pode acabar com qualquer possibilidade dessas pessoas procurarem um emprego, estudarem e viverem em uma sociedade que as discrimina pelo fato de ter epilepsia e um declinio cognitivo comprovado.

Sintomas depressivos e qualidade de vida em indivíduos com epilepsia por esclerose mesial temporal

INTRODUCTION: Depressive symptoms and quality of life in people with epilepsy related to mesial temporal sclerosis Introduction: Difficulties in working, interpersonal, familial and social relationships, the perception of stigma, the discrimination by others have been associated with interictal depressive state influencing negatively the quality of live (QOL) of people with epilepsy. Depression has a high prevalence (20-55%) in epilepsies, being considered the most important factor in the judgment of the patient concerning his QOL. Objective: To evaluate the occurrence of depressive symptoms in patients with temporal lobe epilepsy due to mesial temporal sclerosis (MTS); to study the association between depressive symptoms and QOL as well as of the lateralization of the structural lesion and depressive symptoms. Methodology: 70 patients with MTS in the Outpatient Clinic were evaluated between June 2003 and April 2005. Besides the clinical anamnesis and examination all the patients had ancillary exams (EEG, video-EEG, MRI), psychological and psychiatric evaluation and QOL evaluation which was performed with a semi-structured interview, the questionnaire Medical Outcomes Short Form 36 (SF-36) and the Beck Depression Inventory (BDI). Results: 42 (60%) patients were female and 28 (40%) male. The average age was 37 and the mean epilepsy duration 26. In 40 (57%) MTS was located on the left and in 30 (42%) on the right. As to the work situation, 34 (49%) were in welfare/retired due to illness/without any productive activity. 31 (44%) stated that lack of work was the greatest burden of epilepsy. 39 (56%) presented depressive symptoms with lower scores in the SF-36 when compared to those without depression. A high score of the BDI, an indication of depression, maintained a significant association (Spearman coefficient p < 0.001) in all SF-36 domains with the exception of Functional Capacity. There was, however, no correlation between the lateralization of MTS and depressive symptoms. Conclusion: The presence of depression influences the personal judgment in relation to QOL. The systematic use of simple instruments would allow the precocious identification of humor disturbances contributing significantly to the improvement of QOL of people with epilepsy.

Quality of life related to surgical treatment in patients with temporal lobe epilepsy due to mesial temporal sclerosis

INTRODUCTION: Surgery is widely accepted as a modality of treatment for medically intractable seizures and the main goals of surgery as reduction or elimination of seizures without significant compromise in neurological function and improving QOL. PURPOSE: To assess QOL pre- and post-surgery in a sample of patients with temporal lobe epilepsy (TLE) due to mesial temporal sclerosis (MTS). METHODS: Thirty-five consenting subjects who had undergone corticoamygdalo-hipocampetomy were included in this study. They answered the ESI-55 before and six months after surgical treatment. Analyses of Variance (ANOVA) was used to study the changes in QOL and we also determined the effect-size of the sample. RESULTS: After surgical treatment 18 (51%) subjects were seizure free, 10 (29%) had only auras and seven (20%) had partial seizures. The post-operative mean scores were higher than pre-operative scores, except for Cognitive Function and Limitation due to Cognitive Problems in the group with seizures. A significant improvement in QOL post-surgery was observed in the domains Health-Perception (1.24), Emotional-Well-being (1.32) and Energy/Fatigue (1.43). CONCLUSION: A long-term follow-up is necessary to identify meanigful changes after the surgery.

Tradução e adaptação cultural da Seizure Severity Questionnaire: resultados preliminares

INTRODUCTION: Seizure severity and seizure frequency reduction are the goals in the treatment of epilepsy. Up to the present, there are no validated instruments or studies emphasizing initial reliability and validity of questionnaires to measure seizure severity into Brazilian Portuguese. PURPOSE: This report describes the translation and cross-cultural adaptation of the Seizure Severity Questionnaire (SSQ), an instrument to evaluate seizure frequency and severity. CASUISTIC AND METHODS: The author conceded the original English version to Portuguese translation. Later, two independent native English-speaking teachers fluent in Portuguese translated this consensus version back into English. Comparison of the back-translation with the original English version showed only a few discrepancies, and the English and Portuguese versions were considered conceptually equivalent. Thirty patients regularly treated with temporal lobe epilepsy related to mesial temporal sclerosis answered the questionnaire. RESULTS: Twenty-two adult patients (73%) were male and mean age 37. Ten (33%) reported only auras and 18 Movements or attitudes during the seizures. Two presented Loss of consciousness. For 13 (43%) there was a long time to recuperate after the event. 12 reported Emotional effects and all patients had Body effects. The majority of patients, 28 (94%) considered their seizures extremely severe and for 23 (77%) the recuperation period was the most bother symptom. The association of seizure frequency and Nottingham Health Profile showed statistical significance for the domains: Emotional well-being (p = 0.046), Pain (p = 0.015) and Sleep (p = 0.003). CONCLUSION: This study explored the cultural adaptation of SSQ and its first results. We also assessed the correlation between seizure frequency and quality of life impact. The instrument SSQ could help to understand the seizure concern in the view of the patient.