The perceptions and attitudes of patients with epilepsy to the use of a seizure diary, South Africa

BACKGROUND: Epilepsy is responsible for a significant proportion of the world's disease burden, affecting around 50 million people globally. A seizure diary is a self-management tool for epilepsy focusing on self-monitoring, tracking seizures and other symptoms. This study aimed to determine the perceptions and attitudes to the seizure diary in patients with epilepsy in the Free State and Northern Cape of South Africa. METHODS: This cross-sectional survey method included adult patients with epilepsy attending Universitas Academic Hospital Specialist Epilepsy Clinic in Bloemfontein and local clinics in Kimberley (City, Beaconsfield and Betty Gatsewe), as well as the casualty department of Kimberley hospital (Robert Mangaliso Sobukwe Hospital). The Kimberley patients were diary-unexposed, while the Bloemfontein patients were patients who had previous exposure to the seizure diary. RESULTS: A total of 182 patients with epilepsy were recruited for the study, of whom 65 were patients who had previous exposure to the seizure diary, and 117 were unexposed. In the patients who had previous exposure to the seizure diary, 64 (98.5%) found the diary useful, but 15 (23.1%) reported having various challenges with using the seizure diary. Almost all of the patients who had previous exposure to the seizure diary, 64 (98.5%), were willing to continue to use the diary, while 112 (95.7%) of the diary-unexposed patients were also willing to use the diary. CONCLUSION: Information from some patients using the diary confirms various challenges with its use; however, most patients support the continued usage of the diary.