Report on a psychoeducational intervention for psychogenic non-epileptic seizures in Argentina.

PURPOSE: To examine the effects of a three-session psychoeducational intervention on patients diagnosed with psychogenic non-epileptic seizures (PNES) in an Argentinian public hospital. It was hypothesized that patients would experience improvements in their understanding of PNES, illness perception and affective scores, but might not necessarily experience a significant change in post-traumatic and dissociative symptoms and in seizure frequency. METHODS: This study included 12 patients (10 women, 2 men) who were invited to participate in a psychoeducational group after receiving a V-EEG confirmed diagnosis of PNES. The group consisted of 3 sessions lasting 2 h each. Pre and post measures included Psychoeducational Intervention Questionnaire, State-Trait Anxiety Inventory, Beck Depression Inventory-II, Brief Illness Perception Questionnaire, Posttraumatic Stress Disorder Diagnostic Scale 5, Dissociative Experiences Scale (DES-M). RESULTS: This psychoeducational intervention produced results that were similar to interventions reported in US and European studies with regard to changes on psychological measures. Moreover, many patients also reported (on the final day of the intervention) a decrease in seizure frequency. All patients reported that participating in the intervention was a positive experience. Also, all but one patient referred that the participation in the group would have a positive impact on their quality of life. CONCLUSIONS: Psychoeducational interventions appear to have had positive results in Argentinian patients with PNES. This is initial step in the design of empirically based psychoeducational/supportive initiatives for patients in South America.

La experiencia de pacientes con crisis no epilépticas psicógenas: marcos interpretativos y de acción / A experiência de pacientes com crises não epiléticas psicogênicas: marcos interpretativos e de ação / The experience of patients with psychogenic non epileptic seizures: interpretative and action framework / L´expérience des patients atteints de crise psychogène non épileptique: cadres dinterprétation et daction

Resumen La perspectiva del paciente se presenta como algo importante a tener en cuenta para la comprensión del padecimiento y para lograr un tratamiento efectivo. El objetivo de la presente investigación es indagar las trayectorias terapéuticas y las experiencias durante el recorrido terapéutico de pacientes con Crisis No Epilépticas Psicógenas (CNEP) pertenecientes a un Hospital General de la Ciudad Autónoma de Buenos Aires. Se realizaron entrevistas semiestructuradas a diez pacientes diagnosticados con CNEP. Para el análisis de los datos se utilizó una metodología cualitativa basada en los principios del análisis temático. Se ha identificado una categoría central: Itinerarios terapéuticos dentro del sistema etnomédico y tres subcategorías: (1) Diagnósticos Recibidos; (2) Recursos del sistema etnomédico y (3) Evaluaciones de los recursos utilizados. La dificultad de arribar a un diagnóstico y un tratamiento que permitiera mejorar las CNEP, así como el uso de distintas medicinas, fue destacada por la totalidad de los pacientes.

Resumo A perspectiva do paciente se apresenta como algo importante a levar em conta para a compreensão do sofrimento e para se alcançar um tratamento eficaz. O objetivo desta pesquisa é investigar as trajetórias terapêuticas e as experiências durante a jornada terapêutica de pacientes com crise não epilética psicogênica (CNEP) de um Hospital Geral da Cidade Autônoma de Buenos Aires. Entrevistas semiestruturadas foram realizadas com dez pacientes com diagnóstico de CNEP. Para a análise dos dados, utilizou-se metodologia qualitativa baseada nos princípios da análise temática. Uma categoria central foi identificada: Itinerários terapêuticos dentro do sistema etnomédico; e três subcategorias: (1) Diagnósticos recebidos; (2) Recursos do sistema etnomédico; e (3) Avaliações dos recursos utilizados. A dificuldade de se chegar a um diagnóstico e a um tratamento que permitisse melhorar a CNEP, bem como o uso de diferentes medicamentos, foi destacada por todos os pacientes.

Abstract The patient's perspective is essential to understand their condition and to achieve an effective treatment. The objective of this paper is to investigate the therapeutic trajectories and experiences of patients with Psychogenic Non-Epileptic Crisis (PNES) under treatment in a General Hospital of the Autonomous City of Buenos Aires. Semi-structured interviews were conducted with ten patients diagnosed with PNES. For data analysis, a qualitative methodology based on thematic analysis was adopted. A central category has been identified: Therapeutic Itineraries within the Ethnomedical System, and three subcategories: (1) Diagnoses received; (2) Resources of the ethnomedical system; and (3) Evaluation of the resources used. The difficulty of finding a diagnosis, a treatment to improve PNES, and proper medicine were highlighted by all the patients.

Résumé Le point de vue du patient est présenté comme quelque chose d'important à prendre en compte afin de comprendre la maladie et d'obtenir un traitement efficace. L'objectif de cette recherche est d'analyser les trajectoires thérapeutiques et les expériences au cours du parcours thérapeutique des patients atteints de Crise Psychogénique Non Épileptique (CPNE) dans un hôpital général de la ville de Buenos Aires. Des entretiens semi-structurés ont été menés auprès de 10 patients diagnostiqués avec une CPNE. Pour l'analyse des données, une méthodologie qualitative basée sur les principes de l'analyse thématique a été utilisée. Une catégorie centrale a été identifiée : Les itinéraires thérapeutiques au sein du système ethno-médical et trois sous-catégories : (1) Diagnostics reçus ; (2) Ressources du système ethno-médical ; et (3) Évaluations des ressources utilisées. La difficulté d'arriver à un diagnostic et à un traitement permettant d'améliorer la CPNE, ainsi que l'utilisation de médicaments différents, a été soulignée par l'ensemble des patients.

Long-term outcome in a sample of underprivileged patients with psychogenic nonepileptic seizures (PNES) living in Argentina.

OBJECTIVE: The objective of the present study was to perform a long-term follow-up of economically disadvantaged Latin American patients diagnosed as having psychogenic nonepileptic seizures (PNES) and contribute to the field's understanding of outcome in this population. BACKGROUND: A handful of studies have examined outcome of patients once the diagnosis of PNES has been communicated. However, the vast majority of these have been conducted in the first world countries with samples that were predominantly Caucasian. There is limited knowledge about outcome in economically disadvantaged Latin American patients diagnosed as having PNES. METHODS: This is a study of 23 patients (20 women, 3 men) with PNES in which demographic data (age, education, nationality, presence of psychological trauma, age of onset) were retrospectively retrieved from medical files. Follow-up was done through a telephonic questionnaire in which investigators collected clinical information (seizure characteristics at follow-up, and treatments employed) and changes in demographic data. RESULTS: Patients from this Argentinian PNES sample demonstrated having many similar demographic and clinical characteristics to samples from US and European studies. Long-term follow-up revealed, however, decreased seizure frequency and intensity as well as a substantial improvement in occupational status. A majority had engaged in psychotherapy as well as alternative and complementary approaches. A majority had also developed what are suspected to be other functional symptoms. CONCLUSIONS: Argentinian patients from economically disadvantaged backgrounds, diagnosed as having PNES reported improvements in seizure frequency and occupational status during long-term follow-up. Future studies will need to focus on what (e.g., communication of diagnosis, psychotherapy, alternative treatments) may have contributed to these changes.

What patients think about psychogenic nonepileptic seizures in Buenos Aires, Argentina: A qualitative approach.

PURPOSE: To analyse the methods of reasoning with regard to patients' experiences of living with psychogenic nonepileptic seizures (PNES) in Buenos Aires, Argentina. METHOD: A qualitative approach using semi-structured interviews was used to gain an in-depth and contextual understanding of the perspectives of five patients with PNES. Data collection and analysis were followed by an inductive and interpretive approach informed by the principles of thematic analysis. RESULTS: Explanatory models and prototypes were identified from the patients' narratives. Four patients related their suffering regarding psychosocial causes -family conflicts, sexual harassment, and life changes, among others-. Hereditary and organic hypotheses appeared to be unspecific. Folk explanations were common to all participants (magic, witchcraft, energetic causes). Four patients used the term epilepsy as an illness prototype, focusing on seizures and the use of antiepileptic drugs. Three of them also compared their illness to other people's "attacks" (heart attacks, panic attacks, nervous breakdown). Only one of them referred to someone who was suspected of having epilepsy. CONCLUSION: Patients' psychosocial explanatory models are different from the results of previous studies because these studies indicate that most patients support somatic explanations. Patients also use folk explanations related to traditional medicine, which highlights the interpersonal aspects of the disease. Doctor-patient communication is essential for a correct understanding of PNES, resulting in better outcomes. It could also help to reduce the cultural distance between professionals and patients, leading to narrowing inequalities present in multicultural healthcare services.