Table 1.

Features of the online questionnaires.

First author (publish year)/country	Sample size/number of disorder/gender	Data source	Study design	Assessment of depression/anxiety/psychological distress/sleep disorder	Epilepsy diagnosis/prevalence	Significant predictors in multivariate analysis	Findings
Amal Alkhotani	156/156/Female	An electronic self-administered questionnaire was distributed to PWE via their treating neurologist.	Cross-sectional	Self-report/an electronic self-administered questionnaire	Self-report/NR	59.4% of PWE self-reported a significant increase in stress, 71.2% of PWE experienced a significant change in their sleep.	Patients with uncontrolled epilepsy, sleep disorders, and self-reported stress who were also unable to take medication were more likely to have seizures during the epidemic.
(2020)/Saudi Arabia	n = 97(62%)			(self-reported stress/self-reported stress/disturbed sleep		Anxiety (15.4%) increased, depression (7.1%) increased significantly.
	Male n = 59 (38%)
Jacopo Lanzone (2020)/Italy	879/427/Female	The survey was spread by the efforts of LICE [Lega Italiana Contro l’Epilessia, the Italian	Case control	Polarization score/Survey	Self-report/NR	Distribution between group (significant)	During the lockdown, PWOE increased reactive stress responses to the restrictions. PWE, instead, appeared to internalize more the damage of lockdown. Interestingly, PWE also reported positive feelings about the restrictions more frequently than PWOE.
	n = 327	chapter of the International League Against Epilepsy (ILAE)]		NLP methods/NR/		increased frequency in the occurrence of words with positive “Affin” score in the PWE group compared to
	77%	Foundation and included clinical data and psychometric scales.				the PWOE (X2 = 5.3953, df = 1, p = 0.045, PWE = 10.2%, 29/282; PWOE = 5.2%, 17/323).
	Male					Mean polarization value of − 1.28 in PWE and − 1.39 in PWOE (not significant)
	n = 100
	23%
Giovanni Assenza	928/456/Female	An online survey was created using the free open-access Google TM Forms (https://www.google.com/forms/about/)	Case control	BDI-II/GAD-7/NR/PSQI for sleep	Survey/NR	Anxiety: 39.5% had normal, 28.9% had mild, 21.3% had moderate, and 10.3% had severe	During the pandemic, many patients had increased number of seizures and had difficulty following-up, especially patients with chronic ASM and poor sleep quality.
(2020)/Italy	n = 344	application.				(not significant).
	(78%)					PSQI scale scores did not differ between PWE and PWOE depressive: (65.1%) had normal, 15.1% had mild, 11.6% had moderate, 8.1% had severe depressive (not significant).
	Male
	n = 112
	(22%)
Stijn Van Hees	399/399/Female	Online questionnaire surveys were developed in Belgium, English, Dutch, French, and Portuguese.	Cross-sectional	PHQ-9 and HADS/PHQ-9 and HADS/NR/NR	Follow-up consultation with the treating physician	50.4% of cases showed positive anxiety according	Patients were faced with problems accessing ASM during the pandemic. 50% of the patients had been measured positive for depression. They showed less positive symptoms of anxiety. Also, almost 50% of the respondents cancelled their follow-up consultation with the physicians.
(2020)/Belgium	n = 320				or	to the HADS; also, 39.8% and 46.9% PWE showed positive symptoms for depression via the HADS and PHQ-9 scale, respectively. Female and thus PWE with financial problems experience depression and anxiety.
	80.2%				visit via telephone or online consult./YES
	Male
	n = 79
	19.8%
Corrado Cabona	189/189/Female N = 103	Three Italian Epilepsy Centers set up telephone consultations using a semi-structured interview, allowing collection of data on seizure course during the pandemic.	Cohort	NR/numeric rating scale/NR	Follow-up visit via telephone/NR	Median score for COVID-19 concern was 6 (IQR: 3–8)	Telephone counseling was set up using a semi-structured interview with the aim of managing seizures and treating AED.
(2020)/Italy	(55%)					(not significant).
	Male
	N = 86
	(45%)
Mehri Salari	900/141/Female	The online questionnaire with two referrals at Shahid Beheshti	Cross-sectional	NR/(BAI-II)/NR/NR	Participants before entering the survey by telephone call/NR	The mean BAI-II total score between patient (11.82 ± 9.71) and control (10.28 ± 8.98) (no significant).	The total level of anxiety in PWE did not increase compared with the general population. Anxiety in men of younger ages was significantly higher in the control group. There was no correlation between anxiety, age, and gender in the patient group.
(2020)/Iran	n = 78	and Isfahan Universities of Medical Sciences.	and case–control survey			13.5% of patients and 6.9% of controls have experienced severe level of anxiety (significant).
	(55.40%)
	Male
	n = 63
	(44.6%)
Elena Fonseca	255/255/Female	The Vall d’ Hebron Research Institute Clinical Research Ethics Committee	Cross-sectional	Routine clinical telephone visits with a neurologist	Medical records/NR	Sixty-eight (26.7%) patients reported confinement-related anxiety,	A significant number of patients experienced an increase in the frequency of seizures, and many of them reported anxiety, depressive symptoms, and insomnia. It was found that insomnia and decreased economic status are risk factors for increasing the frequency of tumor-related seizures and drug-resistant epilepsy.
(2020)/Span	N = 121 (47.5%)	and		and a 19-item questionnaire were systematically completed/routine clinical telephone visits with a neurologist		22 (8.6%) depression,
	Male	a neurologist administered		and 19-item questionnaire were systematically completed/No/		31 (12.2%) both, and 72 (28.2%) insomnia.
	N = 134 (52.5%)	a 19-item questionnaire to all participants.		questionnaire		(significant).
Alfonso Giordano	40/40/Female	Outpatient epilepsy clinic of the	Cohort	Hospital Anxiety and Depression	Outpatient clinic during the pre-lockdown period	Anxiety sub-score (8.7%) increased.	A stressful event such as the outbreak of COVID-19 could adversely affect the course of epilepsy.
(2020)/Italy	N = 32	First Division of Neurology at the University of Campania “Luigi Vanvitelli” (Naples, Italy).		Scale	medical records/NR	Depression sub-score (4.7%) increased.
	(80%)			(HADS)/Hospital Anxiety and Depression		Insomnia Severity Index (7.0%) increased
	Male			Scale		(significant).
	N = 8			(HADS)/Scale-Revised (IES-R)/sleep disturbances were measured by Insomnia Severity Scale (ISI)
	(80%)
Xiaoting Hao	504/252/Female	Electronic clinical records in Epilepsy Center in West China Hospital.	Cross-sectional and case-control	NR/NR/K-6 scale/NR	Diagnosed with epilepsy at least 1 year before, and they had to be followed up monthly by an epilepsy specialist	Severe psychological distress (defined as K-6 score > 12; both P ≤ 0.001).	During an outbreak, public health, physicians, and caregivers should focus not only on seizure control but also on the mental health of patients with epilepsy, especially drug-resistant patients with epilepsy.
(2020)/China	N = 132				and	1.6% of the control group and 13.1% of PWE reported severe psychological distress (p < 0.001)
	(52.3%)				they self-reported seizures within 48 hours before completing the questionnaires/NR	(significant).
	Male
	N = 120
	(47.6%)
Colin Reilly	201/Female PWE: 61 (86%) caregiver: 64	An anonymous online survey hosted on Survey Monkey.	Cross-sectional	NR/online survey/online survey/online survey	Self-reports/NR	The majority of young people had poor sleep (72 %) and bad mood (64 %).	The pandemic and associated restrictions have had a negative effect on young PWE. Increases in seizures and reluctance to go to hospital is likely to affect epilepsy handling.
(2021)/UK	Male PWE: 10 (14%) caregiver: 66
Barbara Mostacci	222/222 Female N = 128	Epilepsy Center clinicians and telephone survey.	Cross-sectional	NR/NR/NR/questionnaire for sleep disorder	Self-reported/YES	23.9% of PWE reported sleep changes. 8.5% reported various degrees of disturbed sleep, 11.3% a change of sleep pattern, and 1.8% of them an improvement in sleep.	Most PWE did not report a significant alteration in their clinical conditions during the COVID-19. However, the severity of epilepsy, attendant disability, comorbid psychiatric conditions, sleep disorders, and limited availability to healthcare may impact their health condition.
	(57.64%)
(2020)/Italy	Male: N = 94 (42.23%)
Shanshan Huang/(2020)/China	362/362/	Via online questionnaires in Wuhan, and its surrounding cities.	Cross-sectional	PHQ-9 scale/GAD-7 scale/Patient health questionnaire to identify insomnia and sleep disorders: Insomnia Severity Index (ISI)	Questionnaire/NR	Depression among PWE and PWOE increased; number of seizures was 22.58% versus 12.08%, respectively (significant).	A small proportion of PWE experienced seizure exacerbations during the COVID-19 outbreaks. Stress is an independent factor in causing seizures.
	Female					Anxiety among patients with or without an increased number of seizures was 19.35% versus 8.46% (not significant)
	N = 166					Among patients with or without an increased number of seizures 25.81% versus 19.03% (not significant).
	(45.86%)
	Male
	N = 196
	(54.14%)
Wendy R. Miller/(2020)/USA	94/74/Female	A questionnaire including 65 questions, shared via social media like Facebook pages & Twitter, and also	Cross-sectional and descriptive study	NR/PROMIS anxiety scale/NR	Medical records/NR	Through using the PROMIS anxiety scale, it was asked to rate how they were coping with the current pandemic on a scale of 0–10, with 0 being not at all and 10 being very well, the mean score was 7.08 (SD: 1.89; range: 0–10)	During the pandemic, patients’ medical needs were not met; in some cases, it also increased.
	N = 47 (50%)	via the link embedded in the online advertisement. (hashtags: #COVID-19, #epilepsy, #pandemic, and #research).				(significant).
	Male
	N = 47 (50%)
Kristijonas Puteikis/(2020)/Lithuania	143/143/	A questionnaire in Lithuanian was designed to gather information	Cross-sectional	NR/GAD-7/survey/survey	Questionnaire/NR	The majority of young people and caregivers expressed that the young person’s mood (PWE: 64%; caregiver: 61%) and sleep (PWE: 72%; caregiver: 56%) had worsened since COVID-19 lockdown	Quarantine during the pandemic may lead to worsening seizure control and health status in some PWE.
	Female	about the clinical characteristics of PWE, their health changes and altered the use of healthcare services during a national lockdown.				(significant).
	N = 84
	(58.7%)
	Male
	N = 59
	(41.3%)
Jillian L. Rosengard/(2020)/USA	177/177	The questionnaire was created by neurologists in the	Cross-sectional and cohort	NR/survey	Medical records/YES	Subjects with poorer seizure control were more likely to express increased or worsened stress (80.6% versus 50.0%, P = 0.002) (significant).	The poor access to care and difficulty in receiving anticonvulsant medication are important factors in inducing stress. Many patients reported stress as the main factor in recurrent seizures.
	Female	Montefiore Health System.				Worse sleep increased in those PWE who reported no change or improved seizure control and those who reported worsened seizure control were 41.8% and 48.4% respectively
	N = 120					(no significant).
	(67.8%)
	Male
	N = 57
	(32.2%)
Alvaro Sanchez-Larsen/(2020)/Spain	100/100/Female	In an epilepsy outpatient clinic of a tertiary center in Albacete University General Hospital in the province of Albacete (Castilla-La Mancha, Spain).	Observational and retrospective study based on prospective data collection	Survey/survey/survey/survey	Patients who attended an epilepsy outpatient clinic either face-to-face or via phone during the months of the COVID-19 outbreak and national state of emergency/NR	Exacerbation of stress/anxiety (21 [77.8%] vs 21 [28.8%], OR: 8.67, 95% CI: 3.07–24.50; p < 0.001),	Anxiety and stress due to the confinement were reported as the most important factors in changing the frequency of seizures. Also, seizure control of the patients worsened during the pandemic.
	N = 52					sadness/depression (15 [55.6%] vs 20 [27.4%], OR: 3.31, 95% CI: 1.32–8.29; p = 0.01),
	(52%)					sleep deprivation (16 [59.3%] vs 15 [20.5%], OR: 5.62, 95% CI:2.16–14.61; p < 0.001)
	Male					(significant).
	N = 48
	(48%)

Note: PHQ-9: 9-item of Patient Health Questionnaire (PHQ-9); NLP methods: Natural Language Processing methods; HADS: Hospital Anxiety and Depression Scale; BAI-II: Beck Anxiety Inventory II-Persian; GAD7: General Anxiety Disorder-7; IES-R: Impact of Event Scale-Revised; ISI: Insomnia Severity Index; BDI- II: Beck Depression Inventory scale II; PSQI: Pittsburg Sleep Quality Index; K-6 scale: 6-item Kessler Psychological Distress scale; PWE: People With Epilepsy; PWOE: People Without Epilepsy; NR: Not Reported.