Illness identity in young adults with refractory epilepsy.

INTRODUCTION: Refractory epilepsy is an intrusive condition with important implications for daily functioning in emerging and young adulthood. The present study examined the degree to which refractory epilepsy is integrated in one's identity, and examined how such a sense of illness identity was related to health-related quality of life (HRQOL). METHODS: A total of 121 18- to 40-year-old patients with refractory epilepsy (56.2% women) completed self-report questionnaires assessing the four illness identity states of acceptance, enrichment, engulfment, and rejection (Illness Identity Questionnaire (IIQ)); HRQOL (Quality of Life in Epilepsy Inventory - 31); and seizure frequency and severity (Liverpool Seizure Severity Scale (LSSS)). Illness identity scores were compared with a sample of 191 patients with a nonneurological chronic disease (congenital heart disease). Hierarchical regression analyses were conducted to assess the predictive value of illness identity for HRQOL when simultaneously controlling for demographic and clinical features. RESULTS: Patients with refractory epilepsy scored higher on rejection and engulfment and lower on acceptance when compared with patients with congenital heart disease. Further, seizure severity and number of medication side-effects were positively related to engulfment and negatively to acceptance. Finally, when simultaneously controlling for various demographic and clinical variables, illness identity significantly predicted HRQOL (with engulfment being the strongest and most consistent predictor). CONCLUSION: The extent to which patients with refractory epilepsy succeed in integrating their illness into their identity may have important implications for HRQOL. Clinicians should be especially attentive for signs that patients feel engulfed by their epilepsy.

Personality functioning in adults with refractory epilepsy and community adults: Implications for health-related quality of life.

INTRODUCTION: Prior research has shown that people with epilepsy are at risk for a poorer health-related quality of life (HRQOL). However, patients differ greatly in how well they adjust to their epilepsy. To better understand these differences, the present study examined the role of personality. More specifically, we examined mean-level differences in Big Five personality traits between adults with refractory epilepsy and a community sample and related these traits to patients' HRQOL. METHODS: A total of 121 adults with refractory epilepsy (18-40 years old, 56% women) completed questionnaires on the Big Five personality traits, HRQOL, and seizure frequency and severity. Patients' Big Five scores were compared to those of a community sample matched on sex and age using paired samples t-tests. We conducted hierarchical regression analyses to examine associations between personality and HRQOL, while controlling for the effects of sex, age, age at diagnosis, seizure frequency, and seizure severity. RESULTS: Patients reported higher levels of neuroticism and lower levels of openness as compared to controls. In patients, seizure severity was positively related to neuroticism and negatively related to agreeableness. Finally, patients high in neuroticism and low in conscientiousness generally reported a poorer HRQOL. CONCLUSION: In the present study, small personality differences were observed between adults with refractory epilepsy and a community sample. Patients' personality was found to play an important role in adjusting to epilepsy, even after controlling for seizure frequency and severity. Personality assessment may help healthcare professionals in identifying patients at risk for poor HRQOL later in life.