Quality of life in people with epilepsy and their family caregivers: An Arab experience using the short version of WHO Quality of Life Instrument

Purpose: To assess the subjective quality of life (QOL) of Sudanese epilepsy patients with grand-mal seizures and their family caregivers, using the WHO 26-item QOL Instrument, compared with the general population and previous data; and examine the predictors of QOL. Methods: Consecutive clinic attendees (N = 276) and their family caregivers were assessed in north and central Sudan. Results: Patients’ QOL scores were rather poor (50.6 -60.8%), and significantly lower than their control group. They scored lower than WHO patients for social relations and environment domains, and also had lower environment domain scores than Sudanese diabetes patients. Caregivers had significantly higher scores(57.4 -73.7%) than patients and control group. There was significant concordance between patient’s rating and caregiver’s rating of patient. Patients’ higher QOL was associated with marriage, education, employment, no side effects and caregiver occupation. Caregivers had lower QOL if they were female, patients’ own child, and less educated. The predictors of QOL included caregiver’s proxy rating of the patient’s QOL and drug side effects. Conclusions: Poor QOL in epilepsy reflects social underachievement and calls for programs to remedy their psychosocial circumstance and improve health service provisions. Vulnerable caregivers need to be identified for assistance to enhance their role.