Category: Rare Genetic and Metabolic Diseases
Objective: To assess the impact of COVID-19 related disruption on patients with Wilson’s disease.
Background: Health-care systems around the world were drastically impacted by the coronavirus (COVID-19) pandemic. During the most restricted phase of COVID-19 lockdown, various individuals with WD in India had difficulties accessing healthcare and getting treatment. To investigate this, we conducted cross-sectional research at a single center tertiary care hospital.
Method: Patients with Wilson’s disease that had visited the Movement Disorder (MD) clinic of All India Institute of Medical Sciences in New Delhi were included in this survey. Participants were questioned telephonically using a structure and a validated questionnaire. The patients were questioned about how their symptoms had been affected by the strictest COVID-19 lockdown regulations, along with the difficulty of getting check-ups, tests, and chelation treatments during the initial nationwide lockdown.
Results: Our research included 45 people with WD; 28(62.2%) were males. The mean age and duration of the disease was 20 and 12 years, respectively. All the patients were being treated with chelation therapy and 27 of them were receiving regular follow-up care at the MD clinic prior to the lockdown. During the most restrictive phase of the pandemic, 15 (33.3%) patients faced difficulty getting medication. Three patients passed away during the COVID-19 pandemic, however, their death was not connected to WD. Two out of the 45 patients had used tele consultation services during the COVID-19 lock down. Ten patients (22.22%) found their neurological and hepatic symptoms increased when their chelation therapy was stopped. Out of 45 patients, 25(55.55%) were vaccinated
Conclusion: Wilson’s disease patients were negatively impacted by the COVID-19 pandemic as it became more difficult to access the healthcare. The lack of awareness and access to technology prevented many patients from utilizing the tele-consultation services.
References: 1. Zhuang YP, Zhong HJ. Impact of COVID-19 on the clinical status of patients with Wilson disease. World Journal of Gastroenterology. 2021 Jul 7;27(26):4248.
To cite this abstract in AMA style:A K. Shrivastava, A. Aliyar, MR. Divya, F. Mustafa, K. Sai Krishna, R. Rajan, K. Soman Pillai (). How COVID-19 Impacted Patients with Wilson’s disease? A Questionnaire-based Study From An Indian Movement Disorder Clinic [abstract]. Mov Disord. 2023; 38 (suppl 1). https://www.mdsabstracts.org/abstract/how-covid-19-impacted-patients-with-wilsons-disease-a-questionnaire-based-study-from-an-indian-movement-disorder-clinic/. Accessed September 23, 2023.
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