Aims: The current survey investigated the religious and cultural beliefs about the causes and treatment of epilepsy for people with epilepsy (PWEs) in Saudi Arabia, and also various aspects of their quality of life (QoL).
Participants: A total of 360 participants – 110 people with epilepsy (PWEs), 114 people with multiple sclerosis (PWMSs) and 136 healthy controls (HCs) – were recruited from the Prince Sultan Military Medical City in Riyadh, Saudi Arabia.
Methods: The study proceeded with: (1) a focus group for instrument development; (2) a pilot study for validation and assessment of logistic and statistical aspects; and (3) the main survey. Where necessary instruments were translated into Arabic and validated. The following instruments were used: demographic and clinical questionnaire, religious and cultural beliefs checklist, QOLIE-31, the Arabic version of the RAND SF-36, the Stigma of Epilepsy Scale (three-item scale), the Stigma Scale of epilepsy, NDDI-E, GAD 7, NHS3, LAEP, and AEDs cognitive side effects questionnaire.
Results: Most PWEs in Saudi Arabia in our sample believed in multifactorial causes of epilepsy and multiple treatment methods. Overall the QoL among our PWEs was relatively high. The side effects of antiepileptic drugs (AEDs), and seizure type, depression, anxiety and feeling of stigma were all negative predictors for the QoL, which was significantly worse than the QoL of the PWMSs for various aspects. The scores for the HCs were significantly better than for both the PWEs and the PWMSs. Depression and anxiety scores for PWEs were significantly worse than for the HCs but not than the PWMSs.
Conclusion: In Saudi Arabia, there are religious and cultural beliefs about the cause and treatment of epilepsy that parallel medical beliefs. Overall the QoL in PWEs was relatively high, although worse than in PWMSs or HCs, and was negatively influenced by AED side effects, seizure type, depression, anxiety and feelings of stigma. Having religious beliefs, practising religious rituals and having family support were found to be of great importance and need to be fully appreciated in the medical management of this condition
