Mario Tombini1, Giovanni Assenza2, Livia Quintiliani3, Lorenzo Ricci2, Jacopo Lanzone2, Roberta De Mojà3, Martina Ulivi2, Vincenzo Di Lazzaro2. 1. Unit of Neurology, Neurophysiology, Neurobiology, Department of Medicine, University Campus Bio-Medico, via Álvaro del Portillo 21, 00128 Rome, Italy. Electronic address: m.tombini@unicampus.it. 2. Unit of Neurology, Neurophysiology, Neurobiology, Department of Medicine, University Campus Bio-Medico, via Álvaro del Portillo 21, 00128 Rome, Italy. 3. Psicologia Clinica, Università Campus Bio-Medico, via Álvaro del Portillo 21, 00128 Roma, Italy.
Abstract
OBJECTIVE: The objective of this study was to assess the stigma related to epilepsy from the perspective of people with epilepsy (PWE) and from the Italian community (Rome and central Italy); moreover, the impact of the perceived stigma on the mood and quality of life of patients was also evaluated. MATERIALS AND METHODS: We consecutively enrolled 100 PWE and 202 nonepileptic subjects (NES). Both PWE and NES completed an Italian version of the Stigma Scale of Epilepsy (SSE), a 24-items questionnaire that has been demonstrated to allow the quantification of the stigma perception by patients and people from the community. Moreover, the PWE fulfilled a 3-item Jacoby's Stigma Scale, the Quality of Life in Epilepsy-31 (QOLIE-31 [Q3])), and Beck Depression Inventory II (BDI-II) questionnaires for the evaluation of the quality of life and depressive symptoms. The results of the SSE were correlated with clinical and demographic details of PWE and NES, as well as the Q31 and BDI-II scores in PWE. RESULTS: The SSE scores were significantly higher in NES with respect to PWE (respectively 47.1 vs 39.5, p < .001). Forty-two percent of PWE reported feeling stigmatized, with 5% reporting feeling highly stigmatized. In PWE, the perceived stigma was not correlated with seizure frequency but was significantly associated with worse quality of life, more severe depressive symptoms, and higher number of AEDs. The multiple regression analysis showed that the quality-of-life overall score and Q31 subscale exploring "social function" are the most significant predictors of stigma. CONCLUSIONS: By using an Italian translation of the SSE questionnaire, even if we cannot consider our sample representative of the whole Italian community our study evidenced higher rates of stigma related to epilepsy in NES than in PWE. The PWE still experience feelings of stigmatization strongly correlated with higher depressive symptoms and worse quality of life that has proven to be the most significant predictor of stigma. Finally, seizure frequency does not affect the perceived stigma, which is instead significantly influenced by antiepileptic therapy.
OBJECTIVE: The objective of this study was to assess the stigma related to epilepsy from the perspective of people with epilepsy (PWE) and from the Italian community (Rome and central Italy); moreover, the impact of the perceived stigma on the mood and quality of life of patients was also evaluated. MATERIALS AND METHODS: We consecutively enrolled 100 PWE and 202 nonepileptic subjects (NES). Both PWE and NES completed an Italian version of the Stigma Scale of Epilepsy (SSE), a 24-items questionnaire that has been demonstrated to allow the quantification of the stigma perception by patients and people from the community. Moreover, the PWE fulfilled a 3-item Jacoby's Stigma Scale, the Quality of Life in Epilepsy-31 (QOLIE-31 [Q3])), and Beck Depression Inventory II (BDI-II) questionnaires for the evaluation of the quality of life and depressive symptoms. The results of the SSE were correlated with clinical and demographic details of PWE and NES, as well as the Q31 and BDI-II scores in PWE. RESULTS: The SSE scores were significantly higher in NES with respect to PWE (respectively 47.1 vs 39.5, p < .001). Forty-two percent of PWE reported feeling stigmatized, with 5% reporting feeling highly stigmatized. In PWE, the perceived stigma was not correlated with seizure frequency but was significantly associated with worse quality of life, more severe depressive symptoms, and higher number of AEDs. The multiple regression analysis showed that the quality-of-life overall score and Q31 subscale exploring "social function" are the most significant predictors of stigma. CONCLUSIONS: By using an Italian translation of the SSE questionnaire, even if we cannot consider our sample representative of the whole Italian community our study evidenced higher rates of stigma related to epilepsy in NES than in PWE. The PWE still experience feelings of stigmatization strongly correlated with higher depressive symptoms and worse quality of life that has proven to be the most significant predictor of stigma. Finally, seizure frequency does not affect the perceived stigma, which is instead significantly influenced by antiepileptic therapy.
Authors: Giovanni Assenza; Mario Tombini; Jacopo Lanzone; Lorenzo Ricci; Vincenzo Di Lazzaro; Sara Casciato; Alessandra Morano; Anna Teresa Giallonardo; Carlo Di Bonaventura; Ettore Beghi; Edoardo Ferlazzo; Sara Gasparini; Loretta Giuliano; Francesco Pisani; Paolo Benna; Francesca Bisulli; Fabrizio A De Falco; Silvana Franceschetti; Angela La Neve; Stefano Meletti; Barbara Mostacci; Ferdinando Sartucci; Pasquale Striano; Flavio Villani; Umberto Aguglia; Giuliano Avanzini; Vincenzo Belcastro; Amedeo Bianchi; Vittoria Cianci; Angelo Labate; Adriana Magaudda; Roberto Michelucci; Annapia Verri; Gaetano Zaccara; Vincenzo Pizza; Paolo Tinuper; Giancarlo Di Gennaro Journal: Neurol Sci Date: 2020-06-10 Impact factor: 3.307
Authors: Giovanni Assenza; Jacopo Lanzone; Francesco Brigo; Antonietta Coppola; Giancarlo Di Gennaro; Vincenzo Di Lazzaro; Lorenzo Ricci; Andrea Romigi; Mario Tombini; Oriano Mecarelli Journal: Front Neurol Date: 2020-07-03 Impact factor: 4.003
Authors: Alicia Gonzalez-Martinez; Álvaro Planchuelo-Gómez; Alba Vieira Campos; Francisco Martínez-Dubarbie; José Vivancos; María De Toledo-Heras Journal: Neurol Sci Date: 2021-09-15 Impact factor: 3.830
Authors: Carlo Efisio Marras; Gabriella Colicchio; Luca De Palma; Alessandro De Benedictis; Giancarlo Di Gennaro; Marilou Cavaliere; Elisabetta Cesaroni; Alessandro Consales; Sofia Asioli; Massimo Caulo; Flavio Villani; Nelia Zamponi Journal: Int J Environ Res Public Health Date: 2020-08-24 Impact factor: 3.390