Challenges for low middle-income people with epilepsy during the COVID-19 pandemic: Lessons learnt, call for action.
affordability of medical care
antiseizure medications
lockdown
telemedicine
wellbeing
Journal
Epilepsia open
ISSN: 2470-9239
Titre abrégé: Epilepsia Open
Pays: United States
ID NLM: 101692036
Informations de publication
Date de publication:
12 2022
12 2022
Historique:
received:
15
06
2022
accepted:
16
08
2022
pubmed:
26
8
2022
medline:
3
12
2022
entrez:
25
8
2022
Statut:
ppublish
Résumé
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. 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. 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. 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.
Identifiants
pubmed: 36005396
doi: 10.1002/epi4.12646
pmc: PMC9538458
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
665-673Informations de copyright
© 2022 The Authors. Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.
Références
Bhaskar S, Bradley S, Israeli-Korn S, Menon B, Chattu VK, Thomas P, et al. Chronic neurology in COVID-19 era: clinical considerations and recommendations from the REPROGRAM consortium. Front Neurol. 2020;11:664.
Sureka RK, Gaur V, Gupta M. Impact of COVID-19 on people suffering with epilepsy. Ann Indian Acad Neurol. 2021;24(1):51-5.
Government of India, Ministry of Health and Family Welfare. Psychosocial issues among migrants during COVID-19. [Internet]. 2020 [cited May 21, 2022]. Available from: https://www.mohfw.gov.in/pdf/RevisedPsychosocialissuesofmigrantsCOVID19.pdf
World Health Organisation. Coronavirus Disease (COVID-19). Coronavirus disease (COVID-19) weekly epidemiological update and weekly operational update [Internet] [cited May 21, 2022]. Available from: https://www.who.int/emergencies/diseases/novel-coronavirus-2019/situation-reports
South Africa says it may be on brink of fifth COVID wave. Al Jazeera [Internet]. 2022 [cited May 21, 2022]. Available from: https://www.aljazeera.com/news/2022/4/29/south-africa-says-it-may-be-on-brink-of-fifth-wave-of-covid-19
Hong Kong turns to emergency powers for China help in COVID surge. Al Jazeera [Internet]. 2022 [cited May 21, 2022]. Available from: https://www.aljazeera.com/news/2022/2/24/hong-kong-china-help-covid-surge
China's Shanghai aims to end COVID lockdown by June 1. Al Jazeera [Internet]. 2022 [cited May 21, 2022]. Available from: https://www.aljazeera.com/news/2022/5/16/shanghai-says-it-will-return-to-normal-on-june-1
Beijing imposes new transit restrictions in bid to contain COVID. Al Jazeera [Internet]. 2022 [cited May 21, 2022]. Available from: https://www.aljazeera.com/economy/2022/5/4/china-beijing-imposes-new-transit-restrictions-in-bid-to-contain-covid
North Korea reports first COVID outbreak, orders lockdown. Al Jazeera [Internet]. 2022 [cited May 21, 2022]. Available from: https://www.aljazeera.com/news/2022/5/12/north-korea-reports-first-covid-outbreak-since-pandemic
China imposes new curbs amid worst COVID outbreak in two years. Al Jazeera [Internet]. 2022 [cited May 21, 2022]. Available from: https://www.aljazeera.com/news/2022/3/13/china-announces-new-curbs-amid-worst-covid-outbreak-in-two-years
Mohd SS. Modified Kuppuswamy socioeconomic scale updated for the year 2020. IJFCM. 2020;7(1):1-3.
Millevert C, Van Hees S, Siewe Fodjo JN, Wijtvliet V, de Moura F, Villela E, et al. Impact of COVID-19 on the lives and psychosocial well-being of persons with epilepsy during the third trimester of the pandemic: results from an international, online survey. Epilepsy Behav. 2021;116(107800):107800.
dos Santos LM, Marin de Carvalho R, Domingues AV, Carneiro R, Giacomini F, Valente KD, et al. Patients with epilepsy during the COVID-19 pandemic: depressive symptoms and their association with healthcare access. Epilepsy Behav. 2021;122:108178.
Sanchez-Larsen A, Gonzalez-Villar E, Díaz-Maroto I, Layos-Romero A, Martínez-Martín Á, Alcahut-Rodriguez C, et al. Influence of the COVID-19 outbreak in people with epilepsy: analysis of a Spanish population (EPICOVID registry). Epilepsy Behav. 2020;112:107396.
Fonseca E, Quintana M, Lallana S, Luis Restrepo J, Abraira L, Santamarina E, et al. Epilepsy in time of COVID-19: a survey-based study. Acta Neurol Scand. 2020;142(6):545-54.
Huang S, Wu C, Jia Y, Li G, Zhu Z, Lu K, et al. COVID-19 outbreak: the impact of stress on seizures in patients with epilepsy. Epilepsia. 2020;61(9):1884-93.
Casassa C, Moss R, Goldenholz DM. Epilepsy during the COVID-19 pandemic lockdown: a US population survey. Epileptic Disord. 2021;23(2):257-67.
Rathore C, Baheti N, Bansal AR, Jabeen SA, Gopinath S, Jagtap S, et al. Impact of COVID-19 pandemic on epilepsy practice in India: a tripartite survey. Seizure. 2021;86:60-7.
Pironi V, Ciccone O, Beghi E, Paragua-Zuellig H, Patel AA, Giussani G, et al. Survey on the worldwide availability and affordability of antiseizure medications: report of the ILAE task force on access to treatment. Epilepsia. 2022;63(2):335-51.
Saleem T, Sheikh N, Abbasi MH, Javed I, Khawar MB. COVID-19 containment and its unrestrained impact on epilepsy management in resource-limited areas of Pakistan. Epilepsy Behav. 2020;112:107476.
Nicoletti A, Todaro V, Cicero CE, Giuliano L, Zappia M, Cosmi F, et al. The impact of COVID-19 pandemic on frail health systems of low- and middle-income countries: the case of epilepsy in the rural areas of the Bolivian Chaco. Epilepsy Behav. 2021;118:107917.
Mostacci B, Licchetta L, Cacciavillani C, Di Vito L, Ferri L, Menghi V, et al. The impact of the COVID-19 pandemic on people with epilepsy. An Italian survey and a global perspective. Front Neurol. 2020;11:613719.
Sanabria Sanchinel AA, Escobar Pineda ES, Oliveros I, Perdomo Mendizábal AL, Lara Girón JC, Vega Zeissig E, et al. Telemedicina y epilepsia: experiencia asistencial de un centro de referencia nacional durante la pandemia de COVID-19. Rev Neurol. 2021;73(11):390-3.
Datta P, Barrett W, Bentzinger M, Jasinski T, Jayagopal LA, Mahoney A, et al. Ambulatory care for epilepsy via telemedicine during the COVID-19 pandemic. Epilepsy Behav. 2021;03(116):107740.
Willems LM, Balcik Y, Noda AH, Siebenbrodt K, Leimeister S, McCoy J, et al. SARS-CoV-2-related rapid reorganization of an epilepsy outpatient clinic from personal appointments to telemedicine services: a German single-center experience. Epilepsy Behav. 2020;112:107483.
Abokalawa F, Ahmad SF, Al-Hashel J, Hassan AM, Arabi M. The effects of coronavirus disease 2019 (COVID-19) pandemic on people with epilepsy (PwE): an online survey-based study. Acta Neurol Belg. 2022;122(1):59-66.
Miller WR, Von Gaudecker J, Tanner A, Buelow JM. Epilepsy self-management during a pandemic: experiences of people with epilepsy. Epilepsy Behav. 2020;10(111):107238.
Dash S, Aarthy R, Mohan V. Telemedicine during COVID-19 in India-a new policy and its challenges. J Public Health Pol. 2021;42(3):501-9.
Choudhary N, Chakravarty K, Kharbanda PS, Lal V, Baishya J. Satisfaction and effectiveness of tele-medicine in follow-up of people with epilepsy in a resource-poor setting during COVID-19. Epilepsy Behav. 2022;128:108569.