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November 30, 2022
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May 11, 2025
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Abstract

Background: COVID-19 pandemic has disrupted many aspects of life including the management and treatment of patients with neurometabolic disorders. This questionnaire-based study was planned to know the impact of COVID-19 pandemic on children with neurometabolic disorders and their caregivers, and also to understand the present and future needs of such children.


Methods: The online cross-sectional survey was conducted in the Pediatric Neurology Clinic of the Department of Pediatrics in a tertiary care hospital. Parents and/or primary caregivers of children diagnosed with neurometabolic disorders were contacted telephonically during the pandemic to respond to our questionnaire. Questions were hosted online to know the health and behavioural profile of children with neurometabolic disorders as well as caregivers’ burden.


Results: We contacted 50 families of children with neurometabolic disorders. Of these, 40 families responded to our online survey. The underlying diagnoses were biotinidase deficiency (n=12), mitochondrial encephalopathy (n=9), classical homocystinuria (n=6), cobalamin C defect (n=6), maple syrup urine disease (n=3), phenylketonuria (n=3), and citrullinemia (n=1). During the COVID-19 pandemic, parents preferred home therapy for their children. Most of the children (42.5%) could not avail medical services. Significant number of children had no accessibility to doctors (12.5%) and medicine (40%). Nearly half of them (47.5%) lost their follow-ups with their physician or the hospital. Caregivers felt that their quality of life was affected in the COVID-19 pandemic in several ways, but irrespective of that, 30% caregivers felt more confident in controlling the problems related to their child’s illness.


Conclusion: There was a significant effect of COVID-19 pandemic on the health of children with neurometabolic disorders and the quality of life of their caregivers. The needs of children with neurometabolic disorders need to be kept in mind when formulating care plans during COVID-19 like pandemics and nationwide lockdowns.

Keywords

COVID-19, Neurometabolic disorders, Inborn errors of metabolism, Caregivers, Children, Coronavirus

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Copyright (c) 2024 Yashu Sharma, Gunjan Didwal, Rajdeep Kaur, Savita Verma Attri, Naveen Sankhyan, Arushi Gahlot Saini

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Sharma Y, Didwal G, Kaur R, Verma Attri S, Sankhyan N, Gahlot Saini A. Impact of COVID-19 on the care of children with neurometabolic disorders. JICNA [Internet]. 2025 May 11 [cited 2026 Sep. 8];1(1). Available from: https://jicna.org/index.php/journal/article/view/264
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How to Cite

1.
Sharma Y, Didwal G, Kaur R, Verma Attri S, Sankhyan N, Gahlot Saini A. Impact of COVID-19 on the care of children with neurometabolic disorders. JICNA [Internet]. 2025 May 11 [cited 2026 Sep. 8];1(1). Available from: https://jicna.org/index.php/journal/article/view/264

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