Department of Neurology, Seth GSMC and KEM Hospital, Mumbai, India.
Epilepsia Open. 2022 Dec;7(4):665-673. doi: 10.1002/epi4.12646. Epub 2022 Sep 1.
OBJECTIVE: 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. METHOD: 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. RESULTS: 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. SIGNIFICANCE: 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.
目的:COVID-19 大流行影响了癫痫患者(PWE)的护理。已经进行了几项在线调查,但来自中低收入国家(LMIC)的低收入 PWE 的数据有限,他们无法或无法回答在线调查。本次访谈的目的是了解大流行封锁期间低收入 PWE 面临的挑战。
方法:采访了到三级转诊政府医院癫痫专科门诊就诊以获得补贴服务的 PWE。在访谈中,他们讨论了在大流行封锁期间获得医疗服务、对幸福感、就业和疫苗接种状况的影响方面所面临的挑战。
结果:在接受采访的 214 名 PWE 中,20.6%的人癫痫发作频率增加,28.9%的人无法获得药物,主要是由于旅行限制,30.5%的人报告药物供应不足,50%的人无法负担药物,主要是因为收入减少。51%的人无法进行随访咨询。36%的人报告情绪恶化,一些人报告对其他方面的幸福感产生影响。幸福感的影响与癫痫发作频率的增加显著相关(P<.05)。研究表明,大多数人对疫苗犹豫不决,并期望政府提供财政支持和帮助获取药物。人们对远程医疗服务的认识不足,政府医院也没有充分提供这些服务。
意义:该研究强调需要从低收入 PWE 的具有挑战性的经验中吸取教训,并制定未来的行动计划,以解决医疗费用负担能力和获得远程医疗服务的问题。在大流行期间,绝不能忽视中低收入国家被边缘化、代表性不足的 PWE 的护理。
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