Effects of COVID-19 pandemic on patients with infantile epileptic spasms syndrome and their parents_Journal of Epilepsy

Authors：

LU Qian ^1,2 , DUN Shuo ^1,2 , WANG Qiuhong ^1,2 , WANG Yangyang ² , ZHANG Qi ^1,2 ,  ZOU Liping ^1,2

1. Medical School of Chinese PLA, Beijing 100853, China;
2. Department of Pediatrics, the First Medical Center of PLA General Hospital, Beijing 100853, China;

Corresponding author：

ZOU Liping, Email: zouliping21@sina.com

Keywords：

Coronavirus disease 2019; Infantile epileptic spasms syndrome; Telemedicine; Depressive

DOI：

10.7507/2096-0247.202302003

Video：

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Objective To assess the effects of the Coronavirus disease 2019 (COVID-19) epidemic on patients with infantile epileptic spasms syndrome and their parents through an online questionnaire survey.Methods This study was a cross-sectional study conducted from May to June 2022. The questionnaire focused on seizure attacks, medical visits, and the mental health assessment of parents. Results A total of 67 patients with infantile epileptic spasms syndrome were included in this study. During the epidemic, 25.37% of the patients experienced increased spasms, and 73.13% of the patients had limited commercial availability of anti-seizure medications, mainly vigabatrin and clobazam. All patients had difficulty seeking medical services, and about 73.13% of them used telemedicine service. In addition, 31.34% of parents felt anxious, and 73.14% had different degrees of depressive symptoms. Conclusion The difficulty in seeking medical services, limited commercial availability of anti-seizure medications, and the anxiety and depressive states of parents during the COVID-19 pandemic aggravate the difficulty in management of patients with infantile epileptic spasms syndrome. Improvement of the health care system and medication management strategy, as well as reasonable use of telemedicine service, may help solve this problem.

Citation： LU Qian, DUN Shuo, WANG Qiuhong, WANG Yangyang, ZHANG Qi, ZOU Liping. Effects of COVID-19 pandemic on patients with infantile epileptic spasms syndrome and their parents. Journal of Epilepsy, 2023, 9(2): 108-111. doi: 10.7507/2096-0247.202302003 Copy

1.	Long B, Carius BM, Chavez S, et al. Clinical update on COVID-19 for the emergency clinician: Presentation and evaluation. Am J Emerg Med, 2022, 54: 46-57.
2.	Zuberi SM, Wirrell E, Yozawitz E, et al. ILAE classification and definition of epilepsy syndromes with onset in neonates and infants: position statement by the ILAE Task Force on Nosology and Definitions. Epilepsia, 2022, 63(6): 1349-1397.
3.	O'callaghan FJ, Lux AL, Darke K, et al. The effect of lead time to treatment and of age of onset on developmental outcome at 4 years in infantile spasms: evidence from the United Kingdom Infantile Spasms Study. Epilepsia, 2011, 52(7): 1359-1364.
4.	Grinspan ZM, Mytinger JR, Baumer FM, et al. Management of Infantile Spasms During the COVID-19 Pandemic. J Child Neurol, 2020, 35(12): 828-834.
5.	Xia NG, Lin JH, Ding SQ, et al. Reliability and validity of the Chinese version of the Patient Health Questionnaire 9 (C-PHQ-9) in patients with epilepsy. Epilepsy Behav, 2019, 95: 65-69.
6.	Chang Q, Xia Y, Bai S, et al. Association between pittsburgh sleep quality index and depressive symptoms in chinese resident physicians. Front Psychiatry, 2021, 12: 564815.
7.	Garfan S, Alamoodi AH, Zaidan BB, et al. Telehealth utilization during the Covid-19 pandemic: a systematic review. Comput Biol Med, 2021, 138: 104878.
8.	Cross JH, Kwon CS, Asadi-Pooya AA, et al. Epilepsy care during the COVID-19 pandemic. Epilepsia, 2021, 62(10): 2322-2332.
9.	Daggubati LC, Eichberg DG, Ivan ME, et al. Telemedicine for outpatient neurosurgical oncology care: lessons learned for the future during the COVID-19 pandemic. World Neurosurg, 2020, 139: e859-e863.
10.	Checcucci E, De Luca S, Alessio P, et al. Implementing telemedicine for the management of benign urologic conditions: a single centre experience in Italy. World J Urol, 2021, 39(8): 3109-3115.
11.	Sinha R, Anand V, Gupta J, et al. Infantile spasms and COVID-19: challenges and solutions in resource-limited settings. Epilepsy Res, 2020, 167: 106441.
12.	Klotz KA, Borlot F, Scantlebury MH, et al. Telehealth for children with epilepsy is effective and reduces anxiety independent of healthcare setting. Front Pediatr, 2021, 9: 642381.
13.	Kotulska K, Kwiatkowski DJ, Curatolo P, et al. Prevention of epilepsy in infants with tuberous sclerosis complex in the EPISTOP trial. Ann Neurol, 2021, 89(2): 304-314.
14.	Assenza G, Lanzone J, Brigo F, et al. Epilepsy care in the Time of COVID-19 pandemic in italy: risk factors for seizure worsening. Front Neurol, 2020, 11: 737.
15.	Sanchez-Larsen A, Gonzalez-Villar E, Díaz-Maroto I, et al. Influence of the COVID-19 outbreak in people with epilepsy: analysis of a Spanish population (EPICOVID registry). Epilepsy Behav, 2020, 112: 107396.
16.	Thorpe J, Ashby S, Hallab A, et al. Evaluating risk to people with epilepsy during the COVID-19 pandemic: preliminary findings from the COV-E study. Epilepsy Behav, 2021, 115: 107658.
17.	Reilly C, Muggeridge A, Cross JH. The perceived impact of COVID-19 and associated restrictions on young people with epilepsy in the UK: Young people and caregiver survey. Seizure, 2021, 85: 111-114.
18.	Aledo-Serrano Á, Mingorance A, Jiménez-Huete A, et al. Genetic epilepsies and COVID-19 pandemic: lessons from the caregiver perspective. Epilepsia, 2020, 61(6): 1312-1314.

1. Long B, Carius BM, Chavez S, et al. Clinical update on COVID-19 for the emergency clinician: Presentation and evaluation. Am J Emerg Med, 2022, 54: 46-57.
2. Zuberi SM, Wirrell E, Yozawitz E, et al. ILAE classification and definition of epilepsy syndromes with onset in neonates and infants: position statement by the ILAE Task Force on Nosology and Definitions. Epilepsia, 2022, 63(6): 1349-1397.
3. O'callaghan FJ, Lux AL, Darke K, et al. The effect of lead time to treatment and of age of onset on developmental outcome at 4 years in infantile spasms: evidence from the United Kingdom Infantile Spasms Study. Epilepsia, 2011, 52(7): 1359-1364.
4. Grinspan ZM, Mytinger JR, Baumer FM, et al. Management of Infantile Spasms During the COVID-19 Pandemic. J Child Neurol, 2020, 35(12): 828-834.
5. Xia NG, Lin JH, Ding SQ, et al. Reliability and validity of the Chinese version of the Patient Health Questionnaire 9 (C-PHQ-9) in patients with epilepsy. Epilepsy Behav, 2019, 95: 65-69.
6. Chang Q, Xia Y, Bai S, et al. Association between pittsburgh sleep quality index and depressive symptoms in chinese resident physicians. Front Psychiatry, 2021, 12: 564815.
7. Garfan S, Alamoodi AH, Zaidan BB, et al. Telehealth utilization during the Covid-19 pandemic: a systematic review. Comput Biol Med, 2021, 138: 104878.
8. Cross JH, Kwon CS, Asadi-Pooya AA, et al. Epilepsy care during the COVID-19 pandemic. Epilepsia, 2021, 62(10): 2322-2332.
9. Daggubati LC, Eichberg DG, Ivan ME, et al. Telemedicine for outpatient neurosurgical oncology care: lessons learned for the future during the COVID-19 pandemic. World Neurosurg, 2020, 139: e859-e863.
10. Checcucci E, De Luca S, Alessio P, et al. Implementing telemedicine for the management of benign urologic conditions: a single centre experience in Italy. World J Urol, 2021, 39(8): 3109-3115.
11. Sinha R, Anand V, Gupta J, et al. Infantile spasms and COVID-19: challenges and solutions in resource-limited settings. Epilepsy Res, 2020, 167: 106441.
12. Klotz KA, Borlot F, Scantlebury MH, et al. Telehealth for children with epilepsy is effective and reduces anxiety independent of healthcare setting. Front Pediatr, 2021, 9: 642381.
13. Kotulska K, Kwiatkowski DJ, Curatolo P, et al. Prevention of epilepsy in infants with tuberous sclerosis complex in the EPISTOP trial. Ann Neurol, 2021, 89(2): 304-314.
14. Assenza G, Lanzone J, Brigo F, et al. Epilepsy care in the Time of COVID-19 pandemic in italy: risk factors for seizure worsening. Front Neurol, 2020, 11: 737.
15. Sanchez-Larsen A, Gonzalez-Villar E, Díaz-Maroto I, et al. Influence of the COVID-19 outbreak in people with epilepsy: analysis of a Spanish population (EPICOVID registry). Epilepsy Behav, 2020, 112: 107396.
16. Thorpe J, Ashby S, Hallab A, et al. Evaluating risk to people with epilepsy during the COVID-19 pandemic: preliminary findings from the COV-E study. Epilepsy Behav, 2021, 115: 107658.
17. Reilly C, Muggeridge A, Cross JH. The perceived impact of COVID-19 and associated restrictions on young people with epilepsy in the UK: Young people and caregiver survey. Seizure, 2021, 85: 111-114.
18. Aledo-Serrano Á, Mingorance A, Jiménez-Huete A, et al. Genetic epilepsies and COVID-19 pandemic: lessons from the caregiver perspective. Epilepsia, 2020, 61(6): 1312-1314.

Journal of Epilepsy

Effects of COVID-19 pandemic on patients with infantile epileptic spasms syndrome and their parents

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