Quality of life in people with epilepsy and their family caregivers. An Arab experience using the short version of the World Health Organization quality of life instrument

OBJECTIVE: To assess the subjective quality of life (QOL) of Sudanese epilepsy patients with generalized tonic clonic seizures and their family caregivers, compared with the general population, and previous Sudanese data for chronic conditions, and to examine the predictors of QOL.

METHODS: This cross-sectional study using the World Health Organization's 26-item QOL instrument, was carried out from December 2005 to December 2006, on consecutive government hospital Neurology Clinic attendees and their family caregivers, who fulfilled the study's inclusion criteria, in the cities of Khartoum, Wad Medani, and Atbara, Sudan.

RESULTS: There were 276 patients (56.5% male; mean age 29.5 years). Patients' QOL scores were significantly lower (physical health domain [57.1%], psychological [60.1%], social relations [58.4%], environment [50.6%], and general facet [60.8%]), than the control group. They scored lower than the WHO 23-country patients for social relations and environment domains, and had lower environment domain scores than Sudanese diabetes patients. Caregivers had significantly higher scores (57.4 -73.7%) than patients and control group. 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 children, and less educated. The predictors of QOL included caregiver's proxy rating of the patient's QOL and drug side effects.

CONCLUSION: Poor QOL in epilepsy reflects social underachievement, and calls for programs to remedy their psychosocial circumstance, and improve service provisions. Vulnerable caregivers need to be identified for assistance, to enhance their role. Poor QOL in epilepsy reflects social underachievement, and calls for programs to remedy their psychosocial circumstance, and improve service provisions. Vulnerable caregivers need to be identified for assistance, to enhance their role.