key: cord-0809011-ufe7suc5
authors: Rathore, Chaturbhuj; Baheti, Neeraj; Bansal, Atma Ram; Jabeen, Shaik Afshan; Gopinath, Siby; Jagtap, Sujit; Patil, Sandeep; Suryaprabha, Turaga; Jayalakshmi, Sita; Ravat, Sangeeta; Nayak, Dinesh S; Prakash, Sanjay; Rana, Kaushik; Jaiswal, Shyam K; Khan, Fayaz R; Murthy, Jagarlapudi MK; Radhakrishnan, Kurupath
title: Impact of COVID-19 pandemic on epilepsy practice in India: A tripartite survey
date: 2021-01-08
journal: Seizure
DOI: 10.1016/j.seizure.2020.12.025
sha: 1f0e17075b433e410928df8b90af2a2b7902780a
doc_id: 809011
cord_uid: ufe7suc5

OBJECTIVE: To assess the impact of ongoing COVID-19 pandemic on epilepsy care in India. METHODS: We conducted a three-part survey comprising neurologists, people with epilepsy (PWE), and 11 specialized epilepsy centers across India. We sent two separate online survey questionnaires to Indian neurologists and PWE to assess the epilepsy practice, seizures control, and access to care during the COVID-19 pandemic. We collected and compared the data concerning the number of PWE cared for and epilepsy procedures performed during the 6 months periods preceding and following COVID-19 lockdown from epilepsy centers. RESULTS: The survey was completed by 453 neurologists and 325 PWE. One third of the neurologist reported >50% decline in outdoor visits by PWE and EEG recordings. The cumulative data from 11 centers showed 65-70% decline in the number of outdoor patients, video-EEG monitoring, and epilepsy surgery. Working in a hospital admitting COVID-19 patients and use of teleconsultation correlated with this decline. Half of PWE had postponed their planned outpatient visits and EEG. Less than 10% of PWE missed their antiseizure medicines (ASM) or had seizures due to the nonavailability of ASM. Seizure control remained unchanged or improved in 92% PWE. Half of the neurologists started using teleconsultation during the pandemic. Only 4% of PWE were afflicted with COVID-19 infection. CONCLUSIONS: Despite significant decline in the number of PWE visiting hospitals, their seizure control and access to ASMs were not affected during the COVID-19 pandemic in India. Risk of COVID1-9 infection in PWE is similar to general population.

countries has also affected the access to health care services. The situation is likely to be much worse in low-and middle-income countries (LAMIC) where health care is suboptimal even otherwise. Few available data suggest that there is a worldwide decrease in the number of patients with neurologic disorders attending emergency departments and outpatient clinics during the pandemic. [4] [5] [6] [7] A retrospective study from a stroke unit in the Unites States of America (USA) reported a 22-60% decline in number of emergency admissions, acute ischemic strokes, and transient ischemic attacks. 6 Likewise, in a recent survey by the American Epilepsy Society, almost all the 339 members surveyed felt some difficulty in providing care to people with epilepsy (PWE). 8 The major problems faced by the patients were loss of employment, lack of access to health care, and the fear related to outbreak of viral infection.

The COVID-19 pandemic and resultant lockdowns might have resulted in limited access to antiseizure medicines (ASMs) and the health care facilities for PWE, particularly in LAMIC. Many neurologists are also reluctant to undertake electroencephalogram (EEG), long-term video-EEG monitoring (LTVEM), and epilepsy surgery during the pandemic. This is likely to further delay these procedures and the resultant chance of improved seizure control in many patients. However, no study has quantitatively assessed the impact of the current COVID pandemic on epilepsy care across the world.

This prompted us to undertake this study to gauge the impact of the COVID-19 pandemic on epilepsy care in India, one of the most affected LAMIC in the world, through a tripartite questionnaire-based survey among the neurologists, PWE, and specialized epilepsy centers.

We conducted a three-part survey involving neurologists, PWE, and specialized epilepsy centers across India. As the first part, we conducted an online survey among the general neurologists and epileptologists across India. We prepared a 22-item online questionnaire. The survey questionnaire was initially prepared by the principle investigator (CR). It was circulated among the co-investigators for face validity and content validity and was modified as per the suggestions. After due modifications, we shared the survey questionnaire among the 10 neurologists for their feedback regarding the content and clarity of the questions. We modified the questionnaire as per the feedback and shared the final survey link from 26 th of September, 2020 onwards through emails and cell phones (Supplementary file 1). We sent the survey link to all the registered members of the Indian Academy of Neurology through emails. In addition, we also shared the link with various academic neurology groups, neurologists of all the prominent neurology institutes in the country, and professional societies of various provinces in the country through email and phones. Two reminders were sent 5 days apart with a request to complete the survey. We disabled the online survey link after 10 days on 6 th October, 2020.

As the second part of the survey, we communicated with 11 epilepsy centers across India to obtain the quantitative details of epilepsy care during the pandemic. In India, nationwide lockdown was announced from 23 rd March, 2020 onwards. Through a structured proforma, we obtained following details for a period of 6 months from 23 rd March 2020 to 23 rd September 2020: (1) the number of PWE attending the outdoor clinics and indoor wards; and (2) number of routine EEG, LTVEM, and the epilepsy J o u r n a l P r e -p r o o f surgeries performed. We compared this data with the data of immediately preceding 6 months, i.e., 22 nd September 2019 to 22 nd March 2020. We combined the number of all the PWEs attending the clinics, whether new registrations or follow-up visits. For this study, the LTVEM was defined as VEM for more than 8 hours. Patients admitted to indoor neurology wards for the primary diagnosis and management of epilepsy, other than those admitted for LTVEM, were counted for the indoor epilepsy admissions. This mainly included patients with new onset seizures, acute symptomatic seizures, breakthrough seizures, or status epilepticus.

We conducted the third part of survey among the PWE. We randomly selected 200 PWE from epilepsy registries at each of the three epilepsy centers (Vadodara, Gujarat; Nagpur, Maharashtra; and Gurugram, Haryana) from a group of patients who have attended the epilepsy clinics during the last three years. The 23-item survey questionnaire was prepared, validated, and finalized by the same methodology as described above. The questionnaire was initially translated to local languages (Gujarati and Hindi) by the professional bilingual translators. The translated questionnaires were back-translated by the independent English language speakers and they were reviewed by a team of three bilingual study investigators for conceptual equivalence and clarity.

The translated questionnaire was initially administered to 20 PWE attending the outpatient clinics to check for the clarity and comprehension. Minor changes in the questionnaire were made as per the feedback and final questionnaire was prepared.

The online link to the final questionnaire was sent to the patients through emails and phones (Supplementary file 2). All the PWE were explained the objective and format of the survey by a medical social worker through a phone call. The link to survey was J o u r n a l P r e -p r o o f shared only after PWE or their caregivers were willing to participate in the survey. A single reminder was sent to the patients after 5 days. The survey link was kept active for 10 days from 5 th October to 15 th October, 2020.

We used descriptive statistics including percentages, mean, and median to summarize the survey results. Additionally, we analyzed, using Pearson's Chi-square test, the relationship of following factors with the decline in outpatient visits, routine EEG, LTVEM procedures, and epilepsy surgery numbers as reported by the neurologists: geographical location of the practice, type of work setup (teaching institutes vs.

nonteaching institutes), whether their hospitals were admitting COVID patients or not, proportion of PWE coming from outside the province of practice (<50% vs.>50%), whether any staff member was affected by COVID-19 infection, and routine use of teleconsultation. For the analysis, we divided the dependent variables (numbers of outdoor and indoor patients and procedures) as ≥50% and <50% decline in numbers.

We defined the 6 Indian provinces with highest case numbers (Maharashtra, Tamil Nadu, Andhra Pradesh, Delhi, Uttar Pradesh, and Karnataka) as provinces with high patient load and compared data from these provinces to the rest of the provinces. 9 Subsequently, we undertook multivariate logistic regression analysis with forward stepwise (likelihood ratio) method. Those factors found to be significant on univariate analysis (p ≤0.05) were further entered into logistic regression models with probability for entry of the variables fixed as 0.05 and for removal 0.10. Similarly, we studied the demographic and epilepsy related factors associated with patients missing their hospital visits or worried about their seizure control using binary logistic regression analysis. We 

The study was approved by the institutional ethics committees for human subjects of four major participating centers (Vadodara, Nagpur, Gurugram, and Hyderabad). A general informed consent was included at the beginning of both the online questionnaires stating that attempting and submitting the survey meant that the person has given the consent for participation. To preserve confidentiality, the survey forms did not contain any identifying information of the individuals and no physical signatures were collected from any of the participants. As it is not a clinical trial, the study was not registered with any trial registry.

The 

We compared the attributes of the neurologists reporting ≥ 50% decline in the various practice parameters to those reporting less than 50% decline ( The factors found to be significant on univariate analysis were further entered into 2 step logistic regression models as described in the methods. On logistic regression analysis, working in a hospital recognized for COVID-19 care and the routine use of teleconsultation were significantly associated with the decline in number of outdoor patients. In the first model, hospital admitting COVID patients alone was included with 71% variance (p  0.0001; crude odds ratio 5.46). In the second model we included both the factors and it showed the same variance of 71% (p = 0.002). The results along with the adjusted odds ratio are presented in Table 2 .

J o u r n a l P r e -p r o o f

We have depicted the results of the second part of the survey in Figure 3 . Altogether, 11 epilepsy centers had evaluated more than 24,000 patients and performed 10,618 EEG in the 6 months preceding the COVID lockdown in India. There was 65-70% decline in the number of outdoor patients, routine EEG, LTVEM, and epilepsy surgery during the 6-month COVID period while the number of hospitalized PWE declined by 80%.

The survey was sent to 600 PWE across three centers and was completed by 325 (54%) patients. The demographic details and responses of the patients are provided in Table-3 On reviewing the responses, we noted that 61 (19%) of the responses were provided by the caregivers rather than the patients. This was noted with young children (n=48) or patients with cognitive problems (n=13). The number of responders reporting that that they were worried about the seizure control during the pandemic was similar whether it was reported by the patient or the caregiver (37% vs. 35%; p=0.44). Similarly, there was no difference in the numbers reporting that pandemic had affected their life significantly (17% vs. 16%; p=0.52).

We compared the demographic and epilepsy related characteristics of PWE who missed their hospital visits (vs. who did not miss) or those who were worried about their seizure control (vs. who were not worried) during the pandemic using simple binary logistic regression analysis. None of the demographic (age, gender, and residence) or epilepsy related factors (duration of epilepsy, seizure frequency, and the use of teleconsultation) were associated with missing the hospital visits. Patients with more than 2 seizures per year (odds ratio: 3.87, 95 % CI = 2.37 to 6.34; p  0.0001) and those with worsening in their seizure control (odds ratio: 9.79, 95 % CI = 3.56 to 26.92; p  0.0001) were significantly more worried during the pandemic. These variables were analyzed for model creation and the results are illustrated in supplementary Table 2 .

The goodness of fit tested by Hosmer and Lemeshow test showed (p = 0.76,  2 = 0.068) 72% predictable variance in the 2 step model Ours is the one of the first comprehensive study from the most affected LAMIC in the world to include inputs from neurologists, PWE, and comprehensive epilepsy care centers.

India is the second most severely affected country with 7.3 million confirmed COVID-19 cases by 15 th October, 2020. 10 India has witnessed one of the most stringent and longest lockdowns during the pandemic starting from 23 rd March, 2020, and continuing till date. 11 There were major restrictions in movement of people including public and private transport. Majority of the hospitals, including major government hospitals, had stopped routine outpatient clinics during the initial two months. 12 This resulted in a universal decline in the number of non-COVID patients attending outpatient clinics and J o u r n a l P r e -p r o o f undergoing elective procedures. Many of the hospitals were entirely converted into COVID care hospitals. This is also being reflected in our survey which showed a major decline in the number of PWE attending hospitals and undergoing elective procedures such as LTVEM and epilepsy surgery. India already has a huge surgical treatment gap of epilepsy and waiting lists for LTVEM and epilepsy surgery is almost 1-2 years at the major epilepsy centers. 13 The pandemic has further lengthened the waiting and has delayed the chance of seizure freedom and improved quality of life in many patients.

With a suboptimal health system and the strict lockdown, it was dreaded that epilepsy patients in India and many LAMIC will face enormous difficulties. However, our results show that only a minority of the PWE had difficulty in procuring ASMs or had seizure exacerbation due to the difficulty in accessing medical care. Majority of the PWE did not report any apprehensions related to difficulty in procuring ASM or visiting hospitals. The seizure control worsened only in a minority of the patients. In a questionnaire based survey involving 132 PWE from north India, only 12% of patients reported difficulty in procuring ASMs during the pandemic which is similar to our results. 9 There may be several reasons for PWE not facing major difficulty during the lockdown period. Firstly, even during the strictest period of lockdown, medical stores and pharmacies were not These results are more or less similar to the survey from north India in which majority of the patients did not report any difficulty in accessing medical care. 9 The majority of the PWE also felt that COVID pandemic has not affected their life significantly.

One of the factors which we encountered in practice and subsequently studied through this survey is the willingness of the neurologists and PWE to undertake ASM medicine withdrawal if indicated. There is always an apprehension of seizures on drug withdrawal and subsequent difficulty in accessing medical care especially during the pandemic.

Approximately half of the neurologists and PWE were apprehensive of drug withdrawal. This is an additional aspect of epilepsy care which has been affected during the COVID pandemic.

The other positive aspect which has emerged during the pandemic is the use of telemedicine. 18,19 Teleconsultation was almost nonexistent in India prior to this pandemic. Almost all the major hospitals and individual neurologists have started the facility of teleconsultation within initial two months of pandemic. Approximately half of the neurologists who participated in the survey reported that they were routinely using teleconsultation. The use of teleconsultation was associated with decline in PWE attending hospitals which appears to have a bidirectional relationship. Three-fourths of 

This tripartite survey involving neurologists, people with epilepsy, and specialized epilepsy centers showed that epilepsy care has been significantly affected during the ongoing COVID-19 pandemic in India. There has been significant decline in the number of patients visiting outdoor clinics and undergoing EEG, LTVEM, and epilepsy surgery. This is likely to further worsen the already existing medical and surgical treatment gap in developing countries. However, seizure control and access to ASMS remained largely unaffected during the COVID-19 pandemic. Our results also show that Risk of COVID-19 infection in PWE is similar to general population. J o u r n a l P r e -p r o o f 

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