Quality of life and health-related quality of life

This article will review the various stressors in epilepsy and disease, treatment and psychosocial factors that may contribute to disrupting daily activities and interfering with lifestyles and interests, that impact on overall well-being or quality of life (QOL). We will introduce the concept of illness intrusiveness in epilepsy that reflects diseaseand treatment-induced lifestyle disruptions that compromise QOL. Overview Chronic and potentially life-threatening conditions, such as epilepsy, introduce significant psychological challenges and adaptive demands. Affected individuals experience the continuing threat of unpredictable and uncontrolled seizures and prolonged periods of confusion that sometimes follow the occurrence of seizures. These stressors collectively may contribute to disrupting daily activities, interfering with lifestyles and interests, and generally compromising quality of life (QOL). As compared to individuals without the condition, people with epilepsy report a significant personal impact of unpredictable seizures and the effects of seizure management in terms of reduced social opportunities and leisure activities, limitations on activities and ambitions, family dysfunction, memory changes, increased anxiety and depression, and reduced personal control and self-esteem (Shidharan, Radhakrishnan, Ashok, & Mousa, 1986; Aziz, Ali, Frances, Khan, & Hassan, 1994). These can significantly compromise educational, employment and vocational opportunities, as well as health-related quality of life (HRQOL). In spite of pharmacological or surgical treatment, individuals with epilepsy frequently experience various stressors. Common stressors in epilepsy include unpredictable and uncontrolled seizures with or without loss of awareness, medication side effects, cognitive changes, reduced physical strength and memory, vocational problems, economic strains, inability to drive, dependency on medications or caregivers and/or complications of treatment that are generally believed to introduce significant lifestyle disruptions or limitations (Aziz et al., 1994; Engel, 2000). Understandably, such disruptions are believed to compromise the QOL extending far beyond the influence of the medical situation alone (Dodrill, Batzel, Queisser et al., 1980; Jacoby, Baker, Steen, Potts & Chadwick, 1996). Given both the chronic nature of epilepsy and its common psychosocial consequences, the goal of clinical intervention with pharmacological or surgical treatment has increasingly been extended beyond the control of seizures to improve QOL as much as possible (Jacoby, 1992). This article will review disease, treatment and psychosocial factors in epilepsy that compromise overall well-being or QOL.