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Figure 1. Scatterplot of health-related quality of life (QOLIE-89 Global Score) with (A) depression symptoms (r = -0.49, p = 0.001), and (B) average monthly seizure rates (r = 0.01, p = 0.93) (n = 195) [73].
(Figure omitted. See article PDF.)
Visits to the doctor often begin with the patient being asked 'how do you feel?'Belying the simplicity of this interaction, the recent emergence of quality of life (QoL) as an intense topic for research in epilepsy is based on different methods of posing the question, analyzing the answers and deciding how to respond.
Historically, physicians focused on reducing or stopping seizures, (especially tonic-clonic seizures) because the generally held assumption was that the psychosocial impact of epilepsy paralleled seizure frequency and severity, and would, therefore, resolve with improved seizure control. Recent studies have confirmed the suboptimal QoL experienced by a significant proportion of patients with epilepsy, even those who are seizure-free, particularly with respect to fears and concerns, seizure control, experiences with treatment and employment status [1]. Consequently, optimizing the QoL for patients requires more than seizure control: patients'perspectives on their symptoms and how they feel and function (i.e., their QoL) have become central to their treatment. Therefore, whereas the primary goal of epilepsy management in the past was to control seizures, today's therapeutic objective is to enable patients to be as free from the medical and psychosocial complications of seizures and epilepsy as possible, which includes, but is not limited to, minimizing seizure occurrence [2,3].
Notwithstanding the importance of psychosocial factors, whether seizures are controlled does have a significant influence on QoL [4-8], especially for patients in developing countries [9,10]. Moreover, patients with limited knowledge of epilepsy are at increased risk of the complications of seizures, such as fractures, burns and accidental death [11-15], further reducing QoL and adding to the economic costs of their medical care [16,17]. Educational programs directed to patients may improve seizure outcome and tolerance of drug therapy [18]. However, even patients who are seizure-free and well informed about their disorder may nonetheless experience unemployment and underemployment, driving restrictions, difficulty obtaining life and health insurance, personal suffering and social stigmatization [19-23]; thereby preventing them from achieving the therapeutic objective as defined previously.
This paper reviews...