Epilepsy Arabic renaming to cerebroelectric disorder could minimize the stigma

Background

Naming is an important part of human communication. The precision of medical terms greatly influences the patients and their caregivers. "Alsara’الصرع " is the Arabic term defining epilepsy. However, it has a highly negative impact on patients, as reported by many caring physicians.

Methods

A multiple-choice face-to-face questionnaire was designed to assess stigma among patients with epilepsy (PwE), causes, impact on quality of life, impression of PwE about the Arabic terminology of epilepsy Alsara’, and their opinion regarding changing it to precise term "itrab fi kahrabeit el mokh" اضطراب في كهربية المخ” which means disturbance of the electrical brain activity. Stigma was assessed using a three-item stigma scale.The interviewed subjects were recruited from Cairo, Beni Suef, and Sohag University hospitals consecutively during a period from 15 August 2023 to 30 December 2023.

Results

Three hundred seventy-two PwE responded to the survey. Three hundred fifty-one (94.4 %) PwE felt a disease stigma. About 50 % of them attributed this stigma to the Arabic name of the disease. Eighty-four percent accepted changing the name Alsara’ into “itrab fi kahrabeit el mokh” and 77.2 % suspected a positive impact of this amendment on society. The occurrence of generalized tonic-clonic seizures was found to be an independent risk factor for epilepsy-associated stigma.

Conclusion

The Arabic nomenclature of epilepsy "Alsara’" is not an accurate term for epilepsy. In addition to being associated with many poor misconceptions and stigma. We hope this study will pave the way to replace it with a more appropriate and less defaming term.