Epilepsy: patient views on their condition and treatment

Abstract

To determine how patients with epilepsy feel about their condition, their current medication and their treatment, a mail survey was conducted among a random selection of 800 members of the British Epilepsy Association (BEA). Completed questionnaires were received from 437 members (55% response rate). This high response rate, achieved over a 4-week period, indicates great concern about their condition among the membership sampled. The majority of patients (80%) were adults; 20% were 18 years or younger. Some 72% of patients experienced one or less seizures per month and 52% were employed. Comments from an open-ended question about treatment indicated that respondents would like to see an increase in the provision of services and in the information conveyed (a more interactive communication between the patient and the physician); both issues should improve the emotional support provided by physicians. Positive feelings about medications were reported when seizures were controlled, although unhappiness was expressed with the length of time and varying doses that had to be taken before a 'correct' dosage level was established. Also expressed was a concern about the extent of management and of experimentation with medication left to the patient and care-giver. Opportunities exist for greater communication among physician, patient and care-givers to ease the feeling of frustration, discouragement and isolation seen with a condition which affects 2 to 3% of individuals during their lifetime.