Cross-cultural application of the International Classification of Cognitive Disorders in Epilepsy (IC-CoDE): Cognitive phenotypes in people with temporal lobe epilepsy in India.

OBJECTIVE: Efforts to understand the global variability in cognitive profiles in patients with epilepsy have been stymied by the lack of a standardized diagnostic system. This study examined the cross-cultural applicability of the International Classification of Cognitive Disorders in Epilepsy (IC-CoDE) in a cohort of patients with temporal lobe epilepsy (TLE) in India that was diverse in language, education, and cultural background. METHODS: A cohort of 548 adults with TLE from Mumbai completed a presurgical comprehensive neuropsychological evaluation. The IC-CoDE taxonomy was applied to derive cognitive phenotypes in the sample. Analyses of variance were conducted to examine differences in demographic and clinical characteristics across the phenotypes, and chi-squared tests were used to determine whether the phenotype distribution differed between the Mumbai sample and published data from a multicenter US sample. RESULTS: Using the IC-CoDE criteria, 47% of our cohort showed an intact cognitive profile, 31% a single-domain impairment, 16% a bidomain impairment, and 6% a generalized impairment profile. The distribution of cognitive phenotypes was similar between the Indian and US cohorts for the intact and bidomain phenotypes, but differed for the single and generalized domains. There was a larger proportion of patients with single-domain impairment in the Indian cohort and a larger proportion with generalized impairment in the US cohort. Among patients with single-domain impairment, a greater proportion exhibited memory impairment in the Indian cohort, whereas a greater proportion showed language impairment in the US sample, likely reflecting differences in language administration procedures and sample characteristics including a higher rate of mesial temporal sclerosis in the Indian sample. SIGNIFICANCE: Our results demonstrate the applicability of IC-CoDE in a group of culturally and linguistically diverse patients from India. This approach enhances our understanding of cognitive variability across cultures and enables harmonized and inclusive research into the neuropsychological aspects of epilepsy.

Naming assessment in bilinguals for epilepsy surgery-adaptation and standardization of Boston Naming Test in India.

PURPOSE: Naming difficulty is associated with temporal lobe epilepsy and a decline in naming ability is reported following dominant temporal lobe resections. The Boston Naming Test (BNT) is the most frequently used test for assessing naming ability. Evaluating naming ability in bilingual/multilingual populations is a challenge when participants are restricted to responding in one language. The study aimed to adapt and standardize the BNT as a valid clinical tool for evaluating bilingual/multilingual people undergoing epilepsy surgery in urban India. RESULTS: Culture-appropriate adaptations were done, and participants were allowed to respond in any language. Data from 197 participants showed a strong education effect. The adaptation showed strong internal consistency, reliability, construct validity, and high sensitivity to left temporal lobe epilepsy performance. CONCLUSIONS: The adapted version that allowed for flexible use of more than one language is a useful clinical tool for evaluating bilingual people undergoing epilepsy surgery.

Challenges for low middle-income people with epilepsy during the COVID-19 pandemic: Lessons learnt, call for action.

OBJECTIVE: The COVID-19 pandemic impacted the care of people with epilepsy (PWE). Several online surveys were conducted but there is limited data regarding the impact on low-income PWE from lower-middle income countries (LMICs) who have no access or ability to answer online surveys. The purpose of this interview was to understand the challenges faced by low-income PWE during the lockdown phase of the pandemic. METHOD: PWE visiting the epilepsy specialty outpatient department of a tertiary referral government hospital to avail of subsidized services were interviewed. In the interview, they discussed challenges in obtaining medical care, the impact on wellbeing, employment, and vaccination status during the lockdown phase of the pandemic. RESULTS: Out of the 214 PWE interviewed, 20.6% had increased seizure frequency, 28.9% did not have access to medication mainly due to travel restrictions, 30.5% reported lack of availability of medication and 50% were not able to afford the medication mainly due to loss of income. 51% were unable to have follow-up consultations. 36% reported worsening of mood and some reported impact on other aspects of wellbeing. The impact on wellbeing was significantly associated with an increase in seizure frequency (P < .05). The study revealed hesitation related to vaccines in the majority and expectations of financial support by the government and assistance for procuring medication. There was a lack of awareness about telemedicine services and the same was not adequately offered by government hospitals. SIGNIFICANCE: The study underscores the need to learn lessons from the challenging experiences of low-income PWE and create an action plan for the future to address the issues of lack of affordability of medical care and access to telemedicine. It is critical that the care of the marginalized, underrepresented PWE from lower-middle income countries is not neglected during a pandemic.