Quality of life in people with epilepsy: Associations with resilience, internalized stigma, and clinical factors in a low-income population

Florence Pélissié Du Rausas; Ignacio Lagger; Pierre-Marie Preux; Khadija Serghini Rousseau; Oscar A Martínez

doi:10.1016/j.yebeh.2024.109801

Quality of life in people with epilepsy: Associations with resilience, internalized stigma, and clinical factors in a low-income population

Epilepsy Behav. 2024 Apr 25:155:109801. doi: 10.1016/j.yebeh.2024.109801. Online ahead of print.

Authors

Florence Pélissié Du Rausas¹, Ignacio Lagger², Pierre-Marie Preux³, Khadija Serghini Rousseau⁴, Oscar A Martínez⁵

Affiliations

¹ Aix-Marseille University - Faculty of Medical and Paramedical Sciences, 13005 Marseille, France. Electronic address: florence.pelissie@gmail.com.
² Instituto de InvestigacionesBiomédicas (BIOMED), Consejo Nacional de InvestigacionesCientíficas y Técnicas (CONICET), Pontificia Universidad Católica Argentina, Ciudad Autónoma de Buenos Aires, Argentina.
³ InsermU1094, IRD UMR270, University of Limoges, CHU Limoges, EpiMaCT-Epidemiology of Chronic Diseases in the Tropical Zone, Institute of Epidemiology and Tropical Neurology, OmegaHealth, 87000 Limoges, France.
⁴ STAT inférentielle 34T Rue de BirHakeim 69330 France.
⁵ NeurologyDepartment, Hospital de Clínicas José de San Martín, Ciudad Autónoma de Buenos Aires, Argentina.

PMID: 38669973
DOI: 10.1016/j.yebeh.2024.109801

Abstract

Introduction: Epilepsy is a common neurological disorder associated with comorbidities and a reduced quality of life (QoL). Internalized stigma is negatively correlatedwiththe QoL, whereas high levels of resilience are associated with increased QoL. Although the stigma towards people with epilepsy (PWE) is expected to be higher in low-income settings than in high-income settings, further research is needed. This study aimed to examine the extent to which resilience and internalized stigma correlatewith the QoL in PWE from a low-income population.

Material and methods: A cross-sectional, observational, descriptive study was conducted on 60 PWE who visited the Neurology Department of the Hospital de Clinicas (Buenos Aires, Argentina) between May and September 2022. Demographic and clinical data were collected. Participants completed the Quality of Life, Enjoyment and Satisfaction Questionnaire-Short Form (Q-LES-Q-SF), the Chronic Illness Anticipated Stigma Scale (CIASS), and the Resilience Scale (RS). Variables that showed a significant association with the QoL in the univariate analysis were included in a multiple regression model.

Results: Participants had a low overall QoL score, with a median of 59 (95 %CI: 57.2-61.8). They had an average level of education and a high rate of unemployment. Perceived stigma was higher in the workplace than in the medical or family settings. Univariate analysis revealed that the QoL was associated with internalized stigma score, resilience score, seizure frequency, seizure etiology, work status, and educational level. The multiple regressionrevealed a significant decrease in the QoL when perceived stigma increased (p = 0.0016) or when the cause of epilepsy was structural (p = 0,006) and a significant increase in the QoL when the resilience score was higher (p = 0.0004).

Conclusion: The QoL of PWE in a low-income context is strongly associated with their levels of resilience and internalized stigma. When addressing the social burden of epilepsy, resilience support should be increased in the care of PWE to reduce internalized stigma and improve the QoL.

Keywords: Epilepsy; Internalized stigma; Quality of Life; Resilience.