Neide Barreira Alonso

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.

Are adverse effects of antiepileptic drugs different in symptomatic partial and idiopathic generalized epilepsies? The Portuguese-Brazilian validation of the Liverpool Adverse Events Profile.

We report the results of administration of the Portuguese-Brazilian translation of the Liverpool Adverse Events Profile (LAEP) to 100 patients (mean age=34.5, SD=12.12; 56 females), 61 with symptomatic partial epilepsy (SPE) and 39 with idiopathic generalized epilepsy (IGE) (ILAE, 1989) who were on a stable antiepileptic drug (AED) regimen and being treated in a Brazilian tertiary epilepsy center. Carbamazepine was the most commonly used AED (43.0%), followed by valproic acid (32.0%). Two or more AEDs were used by 69.0% of patients. The mean LAEP score (19 questions) was 37.6 (SD=13.35). The most common adverse effects were sleepiness (35.0%), memory problems (35.0%), and difficulty in concentrating (25.0%). Higher LAEP scores were associated with polytherapy with three or more AEDs (P=0.005), female gender (P<0.001), older age (P<0.001), and uncontrolled seizures (P=0.045). The intraclass coefficient (test-retest reliability) for LAEP overall score was 0.848 (95% CI=0.782-0.895), with a range from 0.370 (unsteadiness) to 0.750 (memory problems). Cronbachs α coefficient (internal consistency) was 0.903. The LAEP was highly correlated with Quality of Life in Epilepsy-31 inventory (r=-0.804, P>0.001) and Hospital Anxiety and Depression Scale (Depression: r=0.637, P<0.001; Anxiety: r=0.621, P<0.001) dimensions. LAEP overall scores were similar in people with SPE and IGE and were not helpful in differentiating adverse effects in these two groups. Clinical variables that influenced global LAEP were seizure frequency (P=0.050) and generalized tonic-clonic seizures in the last month (P=0.031) in the IGE group, and polytherapy with three or more AEDs (P=0.003 and P=0.003) in both IGE and SPE groups.

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.

Adherence to treatment in patients with juvenile myoclonic epilepsy: correlation with quality of life and adverse effects of medication

OBJETIVOS: Este estudo teve como objetivo avaliar a adesao ao tratamento com drogas antiepilepticas (DAEs) em pacientes com Epilepsia Mioclonica Juvenil (EMJ) e correlacionar com a Qualidade de Vida (QV) e com os efeitos adversos a medicacao. METODOLOGIA: A amostra foi composta de 43 pacientes com diagnostico clinico e eletrografico (EEG/Video-EEG) de EMJ (ILAE,1989), em tratamento regular no Hospital Sao Paulo, UNIFESP, Brasil. Todos os pacientes responderam a um questionario de adesao ao tratamento (escores de 0-100), em que escores mais elevados evidenciavam uma pobre adesao ao tratamento. Para avaliar a QV foi utilizada a versao brasileira validada do Quality of Life in Epilepsy Inventory 31 (QOLIE-31); os efeitos adversos das DAEs foram avaliados atraves do Adverse Events Profile (AEP), escores de 19 a 76, no qual escores ≥45 indicam toxicidade. Foram considerados significantes os valores de p<0,05. RESULTADOS: Dezesseis pacientes (37,2%) estavam em monoterapia e 26 (60,4%), em politerapia; 22 (48%) tiveram uma crise nos ultimos tres meses antes da entrevista. A media de adesao ao tratamento foi 68.5. Foram observados escores ≤45 em 38 (88.3%) no AEP e 29 (67.4%) apresentaram queixas espontâneas em relacao ao uso das DAEs. Os efeitos adversos mais comuns foram sonolencia em 11 (13,8%) e inquietacao em 7 (8,8%). A maior media do QOLIE-31 foi 79,0 (Funcionamento Social), e a mais baixa 33,0 (Preocupacao com as Crises). A adesao ao tratamento apresentou correlacao estatistica com valores melhores na QV enquanto valores elevados no AEP indicaram pior adesao (Pearson <0,05). CONCLUSAO: A adesao ao tratamento mostrou alta correlacao com uma melhor QV. A presenca de efeitos adversos foi negativamente associada com a adesao ao tratamento.

Safety of video-EEG monitoring and surgical outcome in patients with mesial temporal sclerosis and psychosis of epilepsy

PURPOSE Cortico-amygdalohippocampectomy (CAH) has become an important treatment option for patients with refractory temporal lobe epilepsy and mesial temporal sclerosis (TLE-MTS); it has resulted in a 60-70% seizure remission rate and significant quality of life (QOL) improvements. Video-electroencephalography (VEEG) monitoring has been widely used in epilepsy centers for pre-surgical evaluation. A major concern in epilepsy surgery is whether to consider CAH treatment in patients with psychosis of epilepsy (POE). This study analyzed the safety and adverse events (AEs) of VEEG monitoring and the post-surgical outcomes of patients with refractory TLE-MTS and POE who underwent CAH. METHOD Clinical, sociodemographic and VEEG data from 18 patients with TLE-MTS and POE were analyzed. Psychiatric evaluations were performed using DSM-IV and ILAE criteria. The seizure outcome was evaluated using Engels criteria. RESULTS Two patients (11.2%) presented AEs that did not result in increased lengths of hospitalization. Of the 10 patients (55.5%) who underwent CAH, 6 (60%) became free of disabling seizures (Engel I). The psychiatric and QOL evaluations revealed improvements of psychotic symptoms (p=0.01) and in Physical Health (p=0.01) following surgery. CONCLUSION These data reinforce that VEEG monitoring is a safe method to evaluate patients with refractory TLE-MTS and POE in epilepsy centers.

Tradução e Adaptação Transcultural do Interictal Dysphoric Disorder Inventory (IDDI) para o Brasil

INTRODUCTION: Interictal dysphoric disorder (IDD) is a behavioral syndrome described mainly in epileptic patients. The pleomorphic and unspecific nature of its symptoms makes difficult its recognition. The Interictal Dysphoric Disorder Inventory (IDDI) is an instrument specifically created to evaluate IDD symptoms and to facilitate its diagnosis. PURPOSE: Translation and cross-cultural adaptation of the Interictal Dysphoric Disorder Inventory (IDDI). METHODS: Twenty-one patients regularly accompanied in the outpatient epilepsy clinic of Universidade Federal de Sao Paulo - UNIFESP answered the questionnaire. The original version in English for translation was obtained with one of the authors (Marco Mula). 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 equivalents. RESULTS: Seventeen female (81%) and four male (19%) answered the questionnaire. The mean age was of 32.3 years and seven had primary school, four had completed secondary and two, higher education. After patients had answered the 21 questionnaires, only three of them did not understand question D of the Appendix section, which had to be rewritten. CONCLUSION: Brazilian patients easily understood the questions of IDDI. We believe that after finishing validation of its psychometric properties this instrument will be very helpful to evaluate the IDD in Brazilian people with epilepsy.

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.