Impact of COVID-19 on the care of children with neurometabolic disorders

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 assess the impact of the COVID-19 pandemic on children with neurometabolic disorders and their caregivers. Methods: Parents and primary caregivers of children diagnosed with neurometabolic disorders were contacted telephonically to respond to an online cross-sectional survey questionnaire after taking informed consent. Questions were hosted online to know the health and behavioral profile of children with neurometabolic disorders as well as caregivers’ burdens. Results: N=40/50 families responded to our online survey. Parents of children with phenylketonuria (n=3), classical homocystinuria (n=6), mitochondrial encephalopathy (n=9), maple syrup urine disease (n=3), cobalamin C defect (n=6), citrullinemia (n=1), and biotinidase deficiency (n=12) took part in the study. During the COVID pandemic, parents preferred home therapy for their children. Most of the children (42.5%) could not avail of therapeutic services. A significant number of children had no accessibility to doctors (12.5%) and medicine (40%) and also lost their follow-ups (47.5%). Caregivers’ quality of life was badly affected but irrespective of that, they felt more confident in controlling the problems related to their child’s illness. Conclusion: There was a significant effect of the COVID-19 pandemic on the health of children with neurometabolic disorders and their caregivers. The study helps in understanding the needs and in developing strategies to combat chronic neurological ailments in unprecedented times such as the COVID-19 pandemic.