The beliefs among patients with epilepsy in Saudi Arabia about the causes and treatment of epilepsy and other aspects.

PURPOSE: The current survey sought to identify the religious and cultural beliefs about the causes and treatment of epilepsy in people with epilepsy from Saudi Arabia and a number of other aspects relating to the possibility of cure, coping with the condition, and public awareness. METHODS: Study instruments were developed on the basis of the literature, a focus group of people with epilepsy, and feedback from people in the field with local knowledge. These were then piloted. A survey was then carried out among a total of 110 adults with epilepsy. Participants were asked to complete questionnaires inquiring into their beliefs about the causes and range of treatments used for epilepsy. Each participant was allowed to choose more than one cause and more than one treatment method. The questionnaires were administered face to face by a clinical psychologist (HAA) to improve the quality of the responses. RESULTS: We found that most adults with epilepsy in Saudi Arabia believe that epilepsy is a condition with multifactorial causation and for which more than one treatment method should be applied. A test from God was the most commonly ascribed cause (83% as well as 40% who believed that some cases of the illness were a punishment from God). The belief in the concept of God's will helped many in the cohort to accept their illness as part of their destiny. Ninety-six percent of the patients believed that there were also medical causes (such as an illness, brain insult, inflammation, heredity, contagion), and a similar proportion believed that there were also religious causes. Smaller proportions believed epilepsy could be due to cultural (78%) or psychosocial causes (64%). Thirty-four percent of people believed that there could be sometimes no cause, but only 2% thought that epilepsy never had any identifiable cause. Most patients did not believe that one treatment alone would help. Ninety-three percent of patients believed in medical treatment, 93% in religious treatment, and 64% in traditional treatments, and 7% believed in changing lifestyle (eating balanced food and positive thinking). Seventy-eight percent of the sample believed that their epilepsy was a curable illness. Ninety-six percent believed that faith and practicing religious rituals helped in coping with epilepsy, and 92% believed that family support helped in coping with epilepsy. Nine percent of patients had stopped their medication for religious reasons or because of a sense of shame, and 7% had at one time been forced by their family to stop their medication. Ninety-two percent of the sample reported having enough family support. Ninety-five percent believed that Saudi society needs more awareness to understand epilepsy. CONCLUSION: In Saudi Arabia, religious and cultural beliefs about the causes and treatment of epilepsy exist alongside medical beliefs. The holding of religious beliefs, the practicing of religious rituals, and the presence of family support were found to be of great importance in coping with epilepsy, and their role needs to be fully appreciated in the medical management of the condition.

The use of the NDDI-E in Arabic to identify symptoms of depression of moderate or greater severity in people with epilepsy.

AIM: The aims of the current study were to translate and to validate the NDDI-E to the Arabic language to be used as a screening instrument to identify moderately severe symptoms of depression in people with epilepsy. METHODS: The English version of the NDDI-E was translated to Arabic and back translated to English by two independent translators. A total of 51 patients, aged 18-56years old, with a diagnosis of epilepsy, completed the Arabic versions of the Beck Depression Inventory (BDI-II) and the NDDI-E. Patients with BDI scores >20 were considered to be suffering from moderately severe depressive symptoms. Cutoff scores, sensitivity, specificity, and positive and negative predictive values of the NDDI-E to identify symptomatic patients on the BDI were calculated. RESULTS: A sensitivity of 93.33% and a specificity of 94.44% were found with NDDI-E total scores >15. The positive predictive value was 87.5%, and the negative predictive value was 97.14%. Spearman's rank correlation between the BDI and the NDDI-E was high (r=.78, p=0.000, N=51). Internal consistency was at 0.926 (Cronbach's alpha). CONCLUSION: The Arabic version of the NDDI-E appears to be a reliable and sensitive instrument in the identification of moderately severe or severe depressive symptoms in people with epilepsy, and it can be used with all Arabic-speaking patients.

Evaluation of health status in epilepsy using the EQ-5D questionnaire: a prospective, observational, 6-month study of adjunctive therapy with anti-epileptic drugs.

AIMS: The aims of this project were to evaluate the impact of adjunctive treatment with an anti-epileptic drug (AED) on the health status of people with epilepsy and to investigate how seizure frequency affects their health status. METHODS: Adult epilepsy patients, refractory to current treatment, were included in this prospective observational study. Patients commencing adjunctive therapy with one of five AEDs (topiramate, lamotrigine, gabapentin, clobazam, vigabatrin) were eligible for inclusion. The study took place at the outpatient clinics of the National Hospital for Neurology and Neurosurgery, Queen Square, London. Patients completed the EQ-5D, a generic health status measure, at baseline and again after 3 and 6 months. Information was also collected on medications and seizure frequency. RESULTS: In total, 125 patients entered the study and were followed up for 6 months. Patients treated with topiramate had a significant increase (p < 0.05) in EQ-5D score from baseline, indicating an improvement in their health status whereas scores for lamotrigine, clobazam and gabapentin all showed a non-significant decline. When the data were analysed according to seizure frequency, only patients who became seizure-free on adjunctive treatment had a significant increase in their health status. The group who had a 50% reduction in seizure frequency did not have increased health status. CONCLUSIONS: In summary, adjunctive treatment with topiramate significantly increased health status as measured by the EQ-5D. These data also suggest that achievement of seizure-freedom is the key to improving health status in this patient group.

Long-term follow-up of topiramate and lamotrigine: a perspective on quality of life.

We conducted a prospective, long-term audit of lamotrigine and topiramate as add-on treatment for refractory epilepsy. A total of 55 patients participated in the study. Five years after starting the drug 7/20 patients remained on lamotrigine and 13/35 on topiramate. The patients still on the study drugs showed an improvement in seizure frequency, with 5/7 patients being seizure free on lamotrigine and 4/13 on topiramate. Furthermore, we assessed quality of life using the quality of life assessment schedule and found a significant improvement for the patients still on the study drugs. These data suggest that about one third of the patients on lamotrigine or topiramate as add-on therapy stay on the drug in the long term. These patients are likely to benefit with respect to objective and subjective outcome measures.