Revisiting personality in epilepsy: Differentiation of personality in two epilepsies starting in adolescence.

PURPOSE: The purpose of this study was to investigate personality characteristics and clinical parameters in two well-defined epilepsies: mesial temporal lobe epilepsy related to hippocampal sclerosis (MTLE/HS) and juvenile myoclonic epilepsy (JME) through NEO Revised Personality Inventory (NEO-PI-R) and Neurobehavior Inventory (NBI) standardized instruments. METHODS: One hundred patients undergoing corticoamygdalohippocampectomy (CAH), 100 patients with JME, and 100 control subjects answered the personality measures. Clinical parameters such as psychiatric symptoms, seizure frequency, duration of epilepsy, and side of the lesion in MTLE/HS group were investigated. Statistical analysis consisted of the mean and standard deviation (SD) of each variable. Student's t-test or Fisher exact test were used according to the variable studied. RESULTS: The three groups were within the average range of NEO-PI-R and NBI, although 'tendencies' and differences were demonstrated. The MTLE/HS and control subjects had a similar profile: low scores in Neuroticism and high in Conscientiousness (r = -0.330; p < 0.001/r = -0.567; p < 0.001, respectively) in opposition to what occurred in JME, low in Conscientiousness and high in Neuroticism (r = -0.509; p = 0.005). The NBI 'sense of personal destiny' trait was higher (3.15; p = 0.003) in MTLE/HS than in JME and controls. The JME 'law and order' scores were lower than in other groups (p = 0.024). A tendency towards specific NBI traits differentiates MTLE/HS (Factor 3) from JME (Factor 1) groups. Psychiatric symptoms and seizure frequency were correlated with worse scores in NBI and, especially, in Neuroticism domain of NEO-PI-R. CONCLUSION: Specific personality features were linked to each epileptic disease. These findings highlight the importance of considering unique features linked to epilepsy conditions in daily clinical observation to develop support programmes.

Psychosocial factors associated with in postsurgical prognosis of temporal lobe epilepsy related to hippocampal sclerosis.

We examined the long-term psychosocial trajectory in a consecutive and homogeneous series of 120 patients followed up for five years after corticoamygdalohippocampectomy (CAH). Evaluation of psychosocial variables at baseline and at five-year follow-up were compared. After five years of CAH, a significant improvement in educational level (p=0.004) and employment status (p<0.001) was observed, although retirement (p<0.001) and divorce (p=0.021) rates increased. In a long-term follow-up, a tendency to have similar QOL profile was observed between Engel classes IA and IB (p>0.05). A more favorable surgical outcome (Engel IA) was related to better psychiatric status (p=0.012). Poor psychosocial adjustment before surgery was the most important predictor of QOL outcome (p<0.05). Patients' trajectory after surgical treatment showed positive effects mainly in those with better seizure outcome. Our results emphasized the influence regarding baseline psychosocial functioning on postoperative psychosocial adjustment. Furthermore, many psychosocial gains and difficulties after surgery may be similar in developing and developed countries.

Are psychiatric disorders exclusion criteria for video-EEG monitoring and epilepsy surgery in patients with mesial temporal sclerosis?

Epilepsy surgery (ES) is a treatment option for patients with refractory temporal lobe epilepsy (TLE). However, psychiatric disorders (PDs) have been a contraindication for presurgical evaluation in many epilepsy centers. The aim of this study was to evaluate the safety of video-EEG (VEEG) and surgical outcome in patients with refractory TLE and mesial temporal sclerosis (TLE-MTS) associated with PDs. We retrospectively analyzed the clinical, sociodemographic, and VEEG data and surgery outcome of patients with refractory TLE-MTS who underwent ES over the period of 2002 to 2011 and compared data between those with and without PDs. Psychiatric evaluation was performed through DSM-IV and ILAE criteria. Safety during presurgical evaluation was analyzed by the rate of adverse events (AEs). Patients' quality of life (QOL) was measured through ESI-55 and the surgical outcome through Engel's classification. Data from 145 patients were included. The mean VEEG length (93h) was not affected by PDs. Among patients with PDs, 4.91% (3/61) had AEs, and 13.11% (8/61) had psychogenic nonepileptic seizures (PNESs). Among patients without PDs, 4.76% (4/84) had AEs, and 5.95% (5/84) had PNESs. In the first two follow-up years, of the 94 patients who underwent ES, 65.85% (27/41) with PDs and 67.92% (36/53) without PDs became free of disabling seizures (Engel I). No significant differences were observed in the patients' QOL between both groups after surgery. The rate of AEs and seizure outcome did not differ significantly between both groups, reinforcing the idea that PDs should not be absolute exclusion criteria for VEEG monitoring and epilepsy surgery among patients with TLE-MTS.

Challenges in the treatment of a chronic disease: A study of narratives of people with juvenile myoclonic epilepsy.

PURPOSE: The purpose of this study was to explore how people with juvenile myoclonic epilepsy perceive the impact of treatment. METHODS: We conducted 14 interviews of participants with juvenile myoclonic epilepsy recruited with the support of the Brazilian Association of Epilepsy in 2018 in São Paulo. Thematic analysis was carried out by two investigators who independently coded the transcripts and reviewed the coding results to check for agreement. RESULTS: Participants' (n = 14, 8 female) mean age was 31.4 years (SD ± 8.3) and their onset of seizures occurred at mean age 13.4 (SD ± 2.9). The answers to the interview questions revealed the paths of participants through life as they dealt with difficulties and challenges. Three interrelated themes and seven sub-themes emerged from the answers of the participants: seizure control, impact of epilepsy and attitude of others. CONCLUSION: This investigation may be useful in providing insights for the interventions of health providers in caring for people with JME. Themes and sub-themes that emerged from this study are connected to important aspects of treatment that go beyond focusing solely on seizures.

A pioneering FreeSurfer volumetric study of a series of patients with mesial temporal lobe epilepsy and hippocampal sclerosis with comorbid depression.

Depression is the most frequent psychiatric comorbidity in patients with mesial temporal lobe epilepsy (MTLE) and hippocampal sclerosis (HS). This study aimed to confirm whether patients with comorbid depression have different volumetric patterns on magnetic resonance imaging, analysing the influence of HS sides. Psychiatrists conducted semi-structured interviews with 75 patients, who were divided into non-depression group (NDG, n = 52) and depression group (DG, n = 23), and compared with 98 controls. The FreeSurfer software was used in the volumetric analysis of the estimated total intracranial volume (eTIV), bilateral cortical and subcortical regions of interest (ROIs), and for presence of left (L-, n = 41) or right (R-, n = 34) MTLE-HS. Twenty-three (30.7%) patients had depression, of whom 14 (34.1%) had l-MTLE-HS and 9 (26.5%) had R-MTLE-HS. No difference was observed between DG and NDG vs. controls in terms of eTIV and cortical ROIs, regardless of the severity of depression. In patients with l-MTLE-HS, the eTIV in the DG was reduced in comparison with that in the NDG and control group, with a small effect size. Hippocampal reduction occurred ipsilateral to HS in the l-MTLE-HS and R-MTLE-HS subgroups when DG and NDG were compared with controls, as expected according to Enhancing Neuro Imaging Genetics through Meta-Analysis (2018).

Do Hippocampal Neurons Really Count for Comorbid Depression in Patients With Mesial Temporal Lobe Epilepsy and Hippocampal Sclerosis? A Histopathological Study.

Depression is the most frequent psychiatric comorbidity seen in mesial temporal lobe epilepsy (MTLE) patients with hippocampal sclerosis (HS). Moreover, the HS is the most frequent pathological hallmark in MTLE-HS. Although there is a well-documented hippocampal volumetric reduction in imaging studies of patients with major depressive disorder, in epilepsy with comorbid depression, the true role of the hippocampus is not entirely understood. This study aimed to verify if patients with unilateral MTLE-HS and the co-occurrence of depression have differences in neuronal density of the hippocampal sectors CA1-CA4. For this purpose, we used a histopathological approach. This was a pioneering study with patients having both clinical disorders. However, we found no difference in hippocampal neuronal density when depression co-occurs in patients with epilepsy. In this series, CA1 had the lowest counting in both groups, and HS ILAE Type 1 was the most prevalent. More studies using histological assessments are needed to clarify the physiopathology of depression in MTLE-HS.

Impulsiveness, personality traits and executive functioning in patients with juvenile myoclonic epilepsy.

PURPOSE: To evaluate impulsiveness in adult patients with JME and its relationship with personality traits and executive functioning. METHODS: Patients completed psychiatric evaluation (DSM IV), Barratt Impulsiveness Scale (BIS-11), Neo Revised Personality Inventory (NEO PI-R) and executive functioning evaluation comprising Controlled Oral Word Association (COWA), Digit Span, Trail Making Tests (TMT), Stroop Test (ST) and Wisconsin Card Sorting Test (WSCT). Healthy controls (63 % female, mean age 35.7 yrs. (±8.37)) were examined to allow calculation of z-scores. RESULTS: 50 patients (70 % female; mean age 32.5 yrs. (±9.2)) presented higher scores of Total (z=-0.37; p = 0.005) and Motor Impulsiveness (z=-0.79; p < 0.001) on BIS-11. Motor Impulsiveness was associated with higher rates of mild psychiatric disorders (depression and anxiety) (p = 0.035) and worse myoclonic seizure control (p = 0.007). NEO PI-R showed differences on Neuroticism (z=-0.60; p < 0.001), Openness (z = 0.38; p = 0.043), Agreeableness (z=-0.38; p = 0.033) and Conscientiousness (z=-0.53; p = 0.003). There were positive correlations between BIS-11 and Neuroticism with Total, Motor and Non-Planning Impulsiveness, on the other hand, Conscientiousness was negatively correlated with these as well as with Attentive Impulsiveness. Patients performance was worse than that of controls on COWA (z=-0.43; p = 0.009) and WCST's Total Number of Completed Categories (z=-2.08; p = 0.005), Trials Taken to Complete First Category (z=-1.56; p = 0.013), Percentage of Total Errors (z=-1.56; p < 0.001), Perseverative Errors (z=-0.73; p = 0.002), Non-Perseverative Errors (z=-1.05; p = 0.003) and Conceptual Level Responses (z=-1.52; p < 0.001). Non-Planning Impulsiveness correlated with Performance (ST and TMT). CONCLUSION: Patients with JME present with impulsive behavior, personality features and executive dysfunction which are linked and may lead to lack of commitment in treatment and affect other aspects of life.

Neuropsychological findings related to the presence of pre-surgical comorbid depression in Latin-American patients with mesial temporal lobe epilepsy and hippocampal sclerosis.

PURPOSE: To evaluate the neuropsychological findings related to the presence of pre-surgical comorbid depression in Latin-American patients with mesial temporal lobe epilepsy (MTLE) and unilateral hippocampal sclerosis (HS). METHOD: Patients with drug-resistant MTLE and unilateral, left (L-) or right (R-) HS were studied. To diagnose depression, psychiatrists with expertise in epilepsy applied a semi-structured interview based on DSM. The depression group (DG) included patients with a psychiatric diagnosis in addition to a Beck Depression Inventory (BDI) score >16 points, and the non-depression group (NDG) included those without this diagnosis and with a BDI score ≤16. We analysed two clusters of neuropsychological tests, which evaluated memory (Complex Rey Figure III, Logical Memory II and RAVLT VII) and attention plus executive functions (Stroop I/II/III and Trail Making A/B). Moreover, we calculated the z-scores (Zs) using a local control group. The DG was compared to the NDG, independently and according to the HS side, using non-parametrical analyses. Due to the multivariate analysis, the p-value was corrected by applyingpost hoc Bonferroni adjustment. RESULTS: We analysed 65 patients. The NDG included 51 (78.4 %) patients, and the DG included 14 (21.5 %) patients. Pre-surgical comorbid depression occurred in eight patients with L- (n = 29) and in six patients with R-MTLE-HS (n = 36). All of these groups had similar gender, age, IQs, and years of schooling. Compared to the healthy subjects, the L-MTLE-HS patients had lower Zs in verbal episodic memory tests [Logical Memory II (p < 0.001), and RAVLT VII (p < 0.001)], and the R-MTLE-HS patients had lower scores in visual episodic memory [Complex Rey Figure III (p < 0.001)]. In the analysis of the DGvs. NDG, there were no differences in the clusters of tests of memory or in those of attention and executive functions. Moreover, when we analysed the patients according to HS side, no neuropsychological difference was observed in the DG and NDG in terms of L- and R-MTLE-HS. CONCLUSIONS: The patients with MTLE and unilateral HS in this study showed no differences in memory, attention and executive functions in relation to the presence of pre-surgical comorbid depression and independently of HS side. In this series from Latin-America, this psychiatric comorbidity did not affect cognition more than epilepsy alone.

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 (Cronbach's 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.

Quality of life and burden in caregivers of patients with epilepsy.

The purpose of this study was to compare quality of life and burden in 100 caregivers of adolescent and adult patients with epilepsy that started in adolescence. We invited caregivers of 50 patients with temporal lobe epilepsy (TLE) related to mesial temporal sclerosis and caregivers of 50 patients with juvenile myoclonic epilepsy (JME) to participate. After the caregivers answered a sociodemographic questionnaire, they answered the Brazilian version of the Burden Interview (BI) Scale and we assessed their quality of life using the 36-Item Short-Form Health Survey (SF-36). The mean ages of patients were 25.4 and 36.4 years and epilepsy duration was 14 and 25.6 years in the JME and TLE groups, respectively. We found a mild to moderate burden on caregivers in both groups, with a BI average score of 25.5 for JME and 30.7 for TLE. Caregivers in the JME group had lower scores in all domains of the SF-36 and reported higher burden. Low scores were also seen in three domains for the TLE group. These results suggest that caregivers of patients with both epileptic syndromes experience interference in their lives. When we compared the two groups, we found no difference between caregiver data on SF-36 and BI. Quality of life was significantly compromised in caregivers of patients with JME and TLE, and the two groups were burdened to a similar degree (mild to moderate). Nurses can carry out psychoeducative programs with the objective of diagnosing the impact of epilepsy in the family, decreasing burden, and improving quality of life for caregivers.

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 Engel's 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.

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 (Cronbach's 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 (Cronbach's 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.

Suporte familiar nas epilepsias / Family support in epilepsy

INTRODUÇÃO: Na abordagem de pacientes com epilepsia, particularmente aqueles com crises refratárias ao tratamento clínico, raramente os aspectos relacionados ao suporte familiar desse pacientes são contemplados. Neste artigo nós discutimos conceitos fundamentais como família e suporte familiar e a importância desses conceitos no tratamento multidisciplinar de pessoas com epilepsia. METODOLOGIA: As escalas para mensuração do suporte familiar são discutidas, destacando-se os principais aspectos abordados em cada uma das escalas. CONCLUSÃO: O uso rotineiro dessas escalas permitiria uma análise objetiva do funcionamento e suporte familiar de pacientes com epilepsia, devendo por isso ser objeto de futuros estudos, que enriqueceriam a compreensão do impacto das epilepsias sobre a família, bem como possibilitariam a intervenção precoce nas famílias disfuncionais, com melhora da qualidade de vida.

INTRODUCTION: In the approach of patients with epilepsy, particularly those with clinically refractory seizures, aspects related to the family support of such patients are seldom contemplated. In this article we discuss fundamental concepts such as family and family support, as well as the importance of these concepts in the multidisciplinary treatment of persons with epilepsy. METHODS: The scales that are used for measuring of family support are discussed, with emphasis on the main aspects of each scale. CONCLUSION: Routine use of these scales would allow for an objective analysis of family functioning and support in patients with epilepsy, and thus should be object of future studies, which would enrich the understanding of the impact of epilepsy on families, and would also permit early interventions in dysfunctional families, leading to quality of life improvement.

Tradução e adaptação transcultural do Interictal Dysphoric Disorder Inventory (IDDI) para o Brasil / Translation and cross-cultural adaptation of the Interictal Dysphoric Disorder Inventory (IDDI)

INTRODUÇÃO: O transtorno disfórico interictal (TDI) se constitui em uma síndrome comportamental descrita principalmente em pacientes com epilepsia. A apresentação pleomófica e inespecífica dos seus sintomas, no entanto, dificulta seu diagnóstico. O Interictal Dysphoric Disorder Inventory (IDDI) é um instrumento recentemente criado com a finalidade de facilitar o diagnóstico do TDI entre os pacientes com epilepsia. OBJETIVO: Tradução e adaptação cultural do Interictal Dysphoric Disorder Inventory (IDD) MÉTODOS: Vinte e um pacientes em acompanhamento regular no ambulatório de Epilepsia do Departamento de Neurologia e Neurocirurgia da Universidade Federal de São Paulo - UNIFESP responderam ao questionário. A versão original foi obtida com um dos autores da escala (Marco Mula) que concedeu a versão original em inglês para a tradução. Dois professores de inglês nativos fizeram a retrotradução. As versões em português e a retrotraduzida foram comparadas à original e após consenso foi obtida a versão final. RESULTADOS: Dos pacientes entrevistados, 17 (81 por cento) eram do sexo feminino, com média de idade de 32,3 anos. Sete completaram o ensino fundamental, enquanto quatro completaram o ensino médio e dois, o ensino superior. Após a aplicação dos 21 questionários apenas a questão D do Apêndice não foi compreendida por três pacientes, tendo sido reescrita. CONCLUSÃO: o ITDI demonstrou-se uma escala de fácil aplicação na população brasileira, constituindo-se de grande utilidade para a avaliação do TDI em pacientes com epilepsia.

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 São 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 percent) and four male (19 percent) 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.

Qualidade de vida e epilepsia: perspectivas futuras e ações práticas para a pessoa com epilepsia / Epilepsy and quality of life symposium: Future perspectives and practice actions to people with epilepsy

INTRODUÇÃO: O evento de Qualidade de Vida (QV) promovido pela ABE teve por objetivo reunir profissionais da área e traçar um breve panorama dos estudos da literatura e da situação dos estudos em nosso país. METODOLOGIA: Temas como instrumentos utilizados mundialmente na avaliação da QV das pessoas com epilepsia (PCE), validações realizadas no Brasil, fatores que afetam a QV nas epilepsias e aspectos da família foram amplamente discutidos. RESULTADOS: Frequência e gravidade das crises, depressão, ansiedade, efeitos adversos das medicações, tratamento cirúrgico, bem como fatores psicossociais (estigma, isolamento social, ausência de suporte) exercem influência marcante sobre a QV. CONCLUSÃO: Ações práticas futuras requerem a realização de estudos brasileiros multicêntricos.

INTRODUCTION: Participants at a workshop sponsored by Associação Brasileira de Epilepsia (ABE) in Brazil, November, 2009 determined the importance of quality of life (QOL) studies. The goal of the symposium was to increase awareness among health care professionals of the importance of QOL reseaches. METHODS: QOL concepts, instruments validation to Brazil, the impact of seizures and influencing factors in QOL were discussed. RESULTS: Seizures severity and frequency, depression, anxiety, adverse drug effects, surgical treatment, and psychosocial factors affecting QOL of people with epilepsy (PWE). The final section looked at the important role of family burden. CONCLUSION: Future multicentric researches in Brazil will allow to understand the implication of seizures in PWE, and to provide tolls to prevent and diminish the negative impact of epilepsy in QOL.

Adherence to treatment in patients with juvenile myoclonic epilepsy: correlation with quality of life and adverse effects of medication / Adesão ao tratamento em pacientes com Epilepsia Mioclônica Juvenil: correlação com qualidade de vida e efeitos adversos da medicação

PURPOSE: To study the adherence to clinical treatment in patients with Juvenile Myoclonic Epilepsy (JME) and its correlation to Quality of Life (QOL) scores, and antiepileptic drugs (AEDs) adverse effects. METHODS: Forty-three JME (ILAE,1989) outpatients in regular treatment were evaluated by clinical anamnesis and EEG/video-EEG at Hospital São Paulo, UNIFESP, Brazil. They answered a self-report questionnaire assessing adherence to treatment (scores 0 to 100), with higher scores meaning poorer adherence; Quality of Life in Epilepsy-31 (QOLIE-31) Brazilian validated version (scores 0 to 100), and the Adverse Events Profile (AEP), scores 19 to 76, in which scores ≥45 indicate toxicity; values less than 0.05 were considered statistically significant. RESULTS: Sixteen patients (37,2 percent) were on monotherapy, while 26 (60.4 percent) on polytherapy. Twenty-two (48 percent) had experienced a seizure in the preceding three months of the survey. Mean adherence to treatment score was 68.5. AEP scores ≤45 were observed in 38 (88.3 percent), and 29 (67.4 percent) reported spontaneous adverse effects with AEDs. The most common adverse effects were sleepiness in 11(13.8 percent), and restlessness in 7(8.8 percent).QOLIE-31 highest mean score was 79.0 (Social Function), and the lowest 33.0 (Seizure Worry). Adherence to treatment presented good correlation to better QOL scores (Pearson<0.05), while higher AEP scores indicated poorer adherence (Pearson<0.05). CONCLUSIONS: Adherence to treatment showed high correlation to better QOL. The presence of adverse effects was negatively associated with adherence.

OBJETIVOS: Este estudo teve como objetivo avaliar a adesão ao tratamento com drogas antiepilépticas (DAEs) em pacientes com Epilepsia Mioclônica Juvenil (EMJ) e correlacionar com a Qualidade de Vida (QV) e com os efeitos adversos à medicação. METODOLOGIA: A amostra foi composta de 43 pacientes com diagnóstico clínico e eletrográfico (EEG/Vídeo-EEG) de EMJ (ILAE,1989), em tratamento regular no Hospital São Paulo, UNIFESP, Brasil. Todos os pacientes responderam a um questionário de adesão ao tratamento (escores de 0-100), em que escores mais elevados evidenciavam uma pobre adesão ao tratamento. Para avaliar a QV foi utilizada a versão brasileira validada do Quality of Life in Epilepsy Inventory 31 (QOLIE-31); os efeitos adversos das DAEs foram avaliados através 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 por cento) estavam em monoterapia e 26 (60,4 por cento), em politerapia; 22 (48 por cento) tiveram uma crise nos últimos três meses antes da entrevista. A média de adesão ao tratamento foi 68.5. Foram observados escores ≤45 em 38 (88.3 por cento) no AEP e 29 (67.4 por cento) apresentaram queixas espontâneas em relação ao uso das DAEs. Os efeitos adversos mais comuns foram sonolência em 11 (13,8 por cento) e inquietação em 7 (8,8 por cento). A maior média do QOLIE-31 foi 79,0 (Funcionamento Social), e a mais baixa 33,0 (Preocupação com as Crises). A adesão ao tratamento apresentou correlação estatística com valores melhores na QV enquanto valores elevados no AEP indicaram pior adesão (Pearson <0,05). CONCLUSÃO: A adesão ao tratamento mostrou alta correlação com uma melhor QV. A presença de efeitos adversos foi negativamente associada com a adesão ao tratamento.

Employment and quality of life in mesial temporal lobe epilepsy with hippocampal sclerosis: is there a change after surgical treatment? / Emprego e qualidade de vida na epilepsia do lobo temporal mesial com esclerose do hipocampo: há uma mudança após a cirurgia?

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 percent) it remained unchanged, in six (10.3 percent) it improved, and one patient (1.7 percent), who was employed before the surgery, retired after that. In a subgroup of 22 patients employed after surgery, ten (45.5 percent) were seizure-free, seven (31.8 percent) had only rare auras, and five (22.7 percent) had seizures. In the group of improvement, 12 patients (70.5 percent) had no-formal employment and five (29.5 percent) had a formal job before surgery. After three years, 14 (63.6 percent) 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 ...

OBJETIVO: Avaliar o estado empregatício e a qualidade de vida (QV) de indivíduos com epilepsia do lobo temporal mesial (ELTM) com esclerose do hipocampo (EH) antes e três anos após a realização de corticoamigdalohipocampectomia e verificar as variáveis demográficas e clínicas associadas ao emprego. METODOLOGIA: 58 pacientes com ELTM com EH submetidos a corticoamigdalohipocampectomia foram avaliados antes e três anos após a cirurgia. Todos responderam ao Epilepsy Surgery Inventory (ES-I55) - versão brasileira como medida da QV, bem como a um breve questionário contendo dados sociodemográficos e clínicos. Alterações na situação de emprego após a cirurgia foram classificadas do seguinte modo: (i) melhora: indivíduos desempregados, com emprego não-formal, estudantes, donas-de-casa e aqueles que nunca haviam trabalhado e que estavam empregados três anos após a cirurgia; (ii) nenhuma mudança: aqueles que não obtiveram modificações em sua situação ocupacional. Esta categoria compreendeu indivíduos que permaneceram empregados, continuaram com atividades domésticas, estudantes, em auxílio doença, aposentados e os que nunca trabalharam; e (iii) piora: perda do emprego. RESULTADOS: A situação de emprego não mudou significativamente após a cirurgia: 51(87.9 por cento) permaneceram com o mesmo estado empregatício anterior à cirurgia, seis (10.3 por cento) tiveram melhora, e um paciente (1.7 por cento), que estava empregado antes da cirurgia, aposentou-se. No subgrupo dos 22 pacientes empregados após três anos, dez (45.5 por cento) estavam livres de crises, sete (31.8 por cento) tinham apenas auras esporádicas e cinco (22.7 por cento) permaneceram com crises. No grupo que obteve melhora, 12 pacientes (70.5 por cento) eram autônomos antes da cirurgia e cinco (29.5 por cento), tinham emprego formal. Na avaliação do terceiro ano após cirurgia, 14 (63.6 por cento) dos 22 indivíduos conseguiram um emprego formal. Nosso estudo verificou que a QV manteve ...

Adaptação transcultural do instrumento para avaliação da qualidade de vida "Quality of Life in Epilepsy-89 (QOLIE-89)"para o Brasil / Cross-cultural translation of the 89- item \"Quality of Life in Epilepsy\" for Brazil

OBJETIVO: Realizar a adaptação transcultural do instrumento para avaliação da qualidade de vida de indivíduos com epilepsia "Quality of Life in Epilepsy-89" (QOLIE-89) para a população brasileira. METODOLOGIA: Dois tradutores bilíngües fizeram a tradução do instrumento original para o português. A seguir, dois professores de inglês nativos e bilíngües ficaram encarregados da retro-tradução. Na segunda fase uma equipe multidisciplinar "Comitê de Juízes" julgou as diversas versões obtidas quanto à clareza, compreensibilidade, manutenção do conceito explorado em cada questão no instrumento original e sua adequação de sentido para nossa população. No terceiro momento, 21 pacientes do ambulatório da Unidade de Pesquisa e Tratamento das Epilepsias (UNIPETE) responderam ao questionário. RESULTADOS: Quinze pacientes (71.4 por cento) eram do sexo feminino, com idade entre 15 e 49 anos. Oito (38.0 por cento) haviam cursado até o ensino fundamental. O tempo médio de aplicação foi de 45 minutos. As dificuldades de compreensão ocorreram apenas nos pacientes que cursaram até a 8ª série. Na versão final em português sofreram modificações as questões 14, 16, 19, 21 e 85. CONCLUSÃO: A versão em português do QOLIE-89 foi facilmente compreendida, sendo mínimas as modificações realizadas no processo de adaptação cultural do instrumento.

PURPOSE: To describe the cross-cultural adaptation of the instrument "Quality of Life in Epilepsy-89 (QOLIE89)" for Brazil. METHODS: Two independent bilingual specialists translated the QOLIE-89 to Portuguese- Brazilian language, who, after discussion, arrived at a consensus version. Later, two independent translators native in the target language and fluent in Portuguese translated this consensus version back into English. The second step was to compare the back-translation with the source version by a Multidisciplinary Committee. The new version was evaluated in order to preserve conceptual equivalence of the source and final versions, adjustment of cultural words and context, clearly content, and fully comprehensibility. In the third step, a final version was tested in a pilot study including twenty-one outpatients with confirmed epilepsy diagnosis in treatment at UNIPETE. RESULTS: Fifteen (71.4 percent) subjects were women, with 15 to 49 years. Eight (38.0 percent) had attended elementary school. The patients required about 45 minutes to complete the questionnaire. In the final Portuguese version of the QOLIE-89, the questions 14, 16, 19, 21 and 85 were considered difficult to understand and were modified. CONCLUSION: The Portuguese-Brazilian version of the QOLIE-89 was easy to understand for most of the patients, after minimal modifications.

Quality of life and the self-perception impact of epilepsy in three different epilepsy types

PURPOSE: This study aimed to evaluate the quality of life (QOL) and verify the domains of greater impact in patients with focal and generalized epilepsies. METHODS: The sample, composed by 57 subjects from Hospital São Paulo da Universidade Federal de São Paulo, was divided into 3 groups, temporal lobe epilepsies (TLE), extra-temporal epilepsies (Extra-TLE) and idiopathic generalized epilepsy (IGE). They answered a preliminary self-reported questionnaire to identify the perception of the most impaired aspects in their lives. The QOL was evaluated through the validated Brazilian version of the Quality of Life Epilepsy Inventory 31 (QOLIE-31). The correlation of the QOLIE-31 domains with epilepsy duration and seizure frequency was defined by dispersion graphics and also Pearson’s and Spearman’s correlation. RESULTS: The most frequently identified impact of epilepsy was related to interpersonal, familial and social relationships mentioned by 13 (22.81 percent) patients. The seizure frequency per patient in Extra-TLE group was significantly greater (p = 0.007) than in the other groups. The Cognition Functioning scores were lower for the Extra-TLE group (38.4) when compared with TLE (52.6) and IGE (62.6) (p = 0.01). The correlation between epilepsy duration and QOLIE-31 domains did not demonstrate statistical significance; however, seizure frequency was correlated with Seizures Worry (p = 0.0463, alpha = 0.05) and Medication Effects (p = 0.0476, alpha = 0.05) domains. CONCLUSIONS: 1) Interpersonal, familial, and social relationships were the dimension which most impacted daily life; 2) Cognition domain in Extra-TLE group showed the worst scores; 3) QOL scores were similar in the three groups for the majority of the QOLIE-31 domains; 4) The seizure frequency in the Extra-TLE group was significantly greater; 5) Seizure frequency was associated with worse QOLIE-31 scores in the domains Seizure Worry and Medication Effects.

OBJETIVO: Este estudo teve como objetivo avaliar a qualidade de vida (QV) em três diferentes grupos de epilepsia e verificar a esfera percebida como de maior impacto na vida diária. METODOLOGIA: A amostra foi composta por 57 pacientes com epilepsias focais e generalizadas do Hospital São Paulo, Universidade Federal de São Paulo, divididos em três grupos, epilepsias do lobo temporal (ELT), extratemporais (Extra-ELT) e generalizadas idiopáticas (EGI). Os pacientes responderam a um questionário preliminar para identificar a percepção sobre os aspectos mais comprometidos em suas vidas. A QV foi avaliada por meio da versão brasileira do Quality of Life in Epilepsy Inventory 31 (QOLIE-31). A correlação dos domínios do QOLIE-31 com a duração da epilepsia e freqüência de crises foi definida pela inspeção dos gráficos de dispersão e pela correlação de Pearson e de Spearman. Foram considerados significantes os valores de p < 0,05. RESULTADOS: Dificuldades nas relações interpessoais, familiares e sociais foram apontadas como a esfera de maior impacto relacionado à epilepsia, citada por 13 (22,81 por cento) pacientes. O QOLIE-31 mostrou resultado semelhante nos três diferentes tipos de epilepsia, com exceção do domínio Funcionamento Cognitivo. Os escores deste domínio foram significativamente menores (p = 0,01) no grupo com Extra-ELT (38,4) do que nos grupos ELT (52,6) e EGI (62,6). A duração da epilepsia não influenciou na QOL nesta amostra, porém foi observada uma correlação estatística significante entre a freqüência de crises e os domínios Efeitos da Medicação (p = 0,0476, alfa = 0,05) e Preocupação com Crises (p = 0,0463, alfa = 0,05). A freqüência de crises mostrou ainda uma diferença estatisticamente significante (p = 0.007) no grupo com Extra-ELT, que apresentou mais crises/paciente, quando comparado aos demais grupos. CONCLUSÕES: Os pacientes identificaram as relações interpessoais, familiares e sociais como sendo a área mais afetada pela...