Epilepsy in the time of COVID‐19

Dear Dr. Ben‐Menachem

We read with interest the recent paper by Fonseca et al ¹ in which they reported the effects of the COVID‐19 pandemic on their epilepsy clinic's patients in Spain who were assessed through a telephonic survey during the first month of confinement (16 March 2020 to 17 April 2020). Their work provides important insight into the impact of the pandemic on persons with epilepsy, particularly in major outbreak areas.

Similar to Spain, the United States (US) has been significantly impacted by the COVID‐19 pandemic. ² However, the severity of disease burden has varied considerably among the various States. As of 5 September 2020, Hawaii accounted for only 9473 cases of the total 6 233 000 cases in the United States. ² , ³ Early government action in Hawaii has been credited with the state's low caseload. These measures included early mandatory confinement (April‐May 2020); closure of non‐essential businesses, recreational parks, and beaches; requiring the wearing of facial masks; enforcing social distancing rules; and a mandatory 14‐day quarantine for all incoming travelers to the islands. ³ Comparatively little is known about the impact of the pandemic on persons with epilepsy in areas of low disease prevalence, like Hawaii.

Hawaii Pacific Neuroscience conducted a telephonic survey on patients seen during the period of mandatory confinement (22 April 2020 to 18 May 2020). To be included in the study, patients must have had an appointment with the clinic, whether in‐person or through telemedicine, during the time of mandatory confinement; all other patients were not considered for inclusion. Patient information and survey responses were de‐identified. The study was conducted as a clinic‐oriented, quality‐improvement survey and was therefore deemed exempt from the Institutional Review Board. At the beginning of each telephone interview, patients’ verbal consent to participate was obtained, and they were informed that they could terminate their participation at any time during the interview.

The survey was a structured questionnaire addressing four areas: general issues regarding their care, experience with telemedicine, general health and well‐being, and disease‐specific changes. Demographic information was also recorded for each participant. Out of 928 patients seen during these 4 weeks, telephone contact was established with 429 (46%) patients, of which 367 (86%) agreed to participate. There was a wide representation of neurological diagnoses and demographic characteristics. Epilepsy was the primary diagnosis of 67 participants and was the condition for which these patients were seen at their appointment during the period of mandatory confinement. Diagnosis of epilepsy was made in accordance with the 2014 ILAE definition of epilepsy. ⁴ Demographic information is presented in Table 1. Responses from persons with a primary diagnosis of epilepsy were compared to those from persons with other primary neurological diagnoses to investigate whether there was a disproportionate impact of the pandemic.

Table 1.

Participant demographics of epilepsy and non‐epilepsy patients

	Epilepsy (n = 67)	Non‐epilepsy (n = 300)
Age
<18	4.5%	0.7%
19‐29	22.4%	7.0%
30‐49	28.4%	29.3%
50‐64	26.9%	31.7%
65+	17.9%	31.3%
Sex
Male	34.3%	44.0%
Female	65.7%	56.0%
Ethnicity
Caucasian	26.9%	32.3%
Asian	16.4%	15.7%
African American	0.0%	1.3%
Hispanic	0.0%	3.0%
Native Hawaiian	29.9%	17.3%
Other Pacific Islander	4.5%	4.7%
American Indian/Alaskan Native	0.0%	0.7%
Other	1.5%	2.3%
Mixed	1.5%	1.3%
Unreported	19.4%	21.3%
Marital status
Married	26.9%	50.3%
Single	50.7%	25.7%
Unreported	6.0%	7.7%
Divorced	9.0%	10.0%
Widowed	6.0%	5.7%
Separated	1.5%	0.7%
Pre‐pandemic work status
Employed	70.1%	66.3%
Retired	13.4%	26.3%
Otherwise unemployed	16.4%	7.3%

Those with epilepsy had a largely positive experience with telemedicine, and most did not report having difficulties accessing care virtually. Nearly half would not have sought care if not for a telemedicine option, and 42.3% would prefer telemedicine over in‐person appointments even after the pandemic. The perceptions of telemedicine were similarly positive between the epilepsy and non‐epilepsy groups (Table 2). Despite its obvious limitations for detailed physical and neurological examination, telemedicine has proven in our experience to be extremely useful in maintaining our patients’ access to health care during the pandemic, particularly for its role in enabling the safe and convenient exchange of information between patients and healthcare providers. We have continued to provide the option of telemedicine for our patients even after the end of the mandatory confinement period given its value for time efficiency, direct/indirect cost savings, and appointment adherence.

Table 2.

Access to health care, perception of telemedicine, and mental and general well‐being during COVID‐19 pandemic for epilepsy and non‐epilepsy neurology patients

Access to healthcare		Epilepsy patients	Non‐epilepsy patients	χ2	P
		n = 67	n = 300
Difficulty obtaining medications	Yes %	7.5	9.3	0.234	.628
Skipped or ran out of medications	Yes %	10.4	10.3	0.001	.978
Unable to attend scheduled doctors visit	Yes %	23.9	24.7	0.018	.892
Unable to obtain diagnostic testing	Yes %	6.0	11.7
Avoided seeing doctor for new health problem due to pandemic	Yes %	9.0	18.0	3.276	.07
Trouble with health insurance	Yes %	4.5	9.0	1.802	.406
Participated in a telemedicine visit	Yes %	38.8	52.0	3.814	.051

Perception of telemedicine a		n = 26	n = 156	χ2	P
Found telemedicine easy to use	Yes %	80.8	88.5	1.194	.274
Telemedicine was as valuable as a face‐to‐face appointment	Yes %	61.5	69.9	0.719	.396
Did telemedicine lack something a face‐to‐face appointment would have?	Yes %	53.8	50.6	0.092	.762
Would have missed appointment without access to telemedicine	Yes %	46.2	44.2	0.033	.855
Would prefer telemedicine appointments post‐pandemic	Yes %	42.3	48.1	1.437	.487
	Depends %	15.4	21.2

Mental and general well‐being		n = 67	n = 299	χ2	P
New or worsening depression	Yes %	25.4	28.1	0.203	.653
New or worsening anxiety	Yes %	34.3	39.1	0.534	.465
New or worsening sleep problems	Yes %	34.3	38.1	0.337	.561
Frequency of exercise	Increase %	14.0	8.9	1.576	.455
	Decrease %	40.4	46.2
Significant weight change	Increase %	22.4	24.7	0.22	.896
	Decrease %	13.4	12.0
Change in alcohol consumption	Increase %	4.5	6.3	7.19	.126
	Decrease %	1.5	6.0
Lost job due to coronavirus b	Yes %	21.3	22.6	0.039	.843

^a Analyses were run only on responses from participants that had a telemedicine appointment during the pandemic.

^b Analyses were run only on responses from participants that were employed prior to the pandemic (n = 47 for epilepsy, n = 199 for non‐epilepsy).

Of those with epilepsy, 46.2% of participants in our study reported experiencing new or worsening depression, anxiety, and/or sleep problems—all of which are associated with worse outcomes in epilepsy patients. Our patients reported similar or higher levels of anxiety (34%), depression (25%), and sleep problems (34%), compared to those reported by Dr. Fonseca and colleagues. ¹ Loss of employment due to mandatory non‐essential business closures was experienced by 21.3% of respondents with epilepsy who had been previously employed (Table 2). Seventeen out of 48 respondents with epilepsy reported having one or more seizures since the start of the pandemic, five of which required emergency services. In contrast to Dr. Fonseca and colleagues’ cohort, we had no confirmed cases of severe acute respiratory syndrome coronavirus 2 (SARS‐CoV‐2) infection.

Note that at the time of the survey, only about 600 cases had been reported in Hawaii vs the approximately 200 000 cases reported in Spain. ¹ Despite the marked differences in case numbers, the surveys conducted by Hawaii Pacific Neuroscience and by Fonseca et al found comparable collateral effects on patients with epilepsy as a result of the pandemic. The similarity in responses despite extreme differences in caseloads suggests that risk of contagion may not significantly account for the negative impact of the pandemic on patients’ mental health and disease symptomatology observed in both studies. Instead, other key factors must be at play, possibly including such things as imposed isolation, economic repercussions, and excessive exposure to stressful pandemic‐related media.

The responses in this study between persons with epilepsy versus other neurological conditions were not significantly different (Table 2). The pandemic had comparable negative collateral effects on our patients’ general well‐being regardless of their underlying neurological condition. Notwithstanding, we concur with Dr. Fonseca and colleagues, that patients with epilepsy have unique circumstances that increase their vulnerability to psychological and socioeconomic stressors cause by the pandemic or by strict public health policies. It is important to actively screen all neurological patients for depression, anxiety, sleep disturbances, adherence to treatment plans, and changes in their social profile which could impact their health, particularly during these troubling times.

CONFLICT OF INTEREST

The authors have no conflicts to declare relevant to this work.

DATA AVAILABILITY STATEMENT

After publication, anonymized data supporting the findings of this study are available from the authors upon reasonable request from any qualified investigator.