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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.
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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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References
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- Trivisano M, Specchio N, Pietrafusa N, Calabrese C, Ferretti A, Ricci R, Renzetti T, Raponi M, Vigevano F. Impact of COVID‐19 pandemic on pediatric patients with epilepsy—The caregiver perspective. Epilepsy Behav. 2020;23:79-86.
References
Kumar SU, Kumar DT, Christopher BP and Doss CG. The Rise and Impact of COVID-19 in India. Frontier in Medicine.2020;7:250.
Saha J, Barman B, Chouhan P. Lockdown for COVID-19 and its impact on community mobility in India: An analysis of the COVID-19 Community Mobility Reports. Child Youth Serv Rev. 2020;116:105160.
Singh S, Roy D, Sinha K, Parveen S, Sharma G, Joshi G. Impact of COVID-19 and lockdown on mental health of children and adolescents: A narrative review with recommendations. Psychiatry Res. 2020;293:113429.
Kaku SM. Mental health of children with neurodevelopmental disorders during COVID-19: A brief report of family experiences from a low and middle income country. 2021;1 5:13591045211026058.
Goswami JN, Sondhi V, Simalti AK, Bamal M, Roy S. Effects of lockdown during corona pandemic on children with neurodevelopmental disorders-A questionnaire-based survey. Turk J Pediatr. 2021;63(4):648-659.
EURORDIS Rare Diseases Europe. Survey shows detrimental impact of coronavirus on rare disease community [press release]. 2020; 04/05/2020.
NORD Rare Insights. COVID-19 community survey report. 2020; 05/05/2020.
Lazzerini M, Barbi E, Apicella A, Marchetti F, Cardinale F, Trobia G. Delayed access or provision of care in Italy resulting from fear of COVID-19. Lancet Child Adolesc Health. 2020; 4: e10-e11.
Pal S, Bhatia S, Bijarnia-Mahay S, Verma IS, Puri RD. Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic. Indian Pediatr. 2021;58:391-392.
Lampe C, Dionisi-Vici C, Bellettato CM, Paneghetti L, Lingen CV, Bonda S, Brown C, Finglas A, Fransisco R, Sestini S et al. The impact of COVID-19 on rare metabolic patients and healthcare providers: results from two MetabERN surveys. Orphanet J Rare Dis. 2020;15:341.
Orsini A, Corsi M, Santangelo A, Riva A, Peroni D, Foiadelli T, Savasta S, Striano P. Challenges and management of neurological and psychiatric manifestations in SARS‐CoV‐2 (COVID‐19) patients. Neurol. Sci. 2020; 41: 2353-2366.
Sebastião FM, Michelin-Tirelli K, Bender F, Lopes FF, Moraes I, Kubaski F, Giugliani R, Burin M. COVID-19 impact on the diagnosis of Inborn Errors of Metabolism: Data from a reference center in Brazil. Genet Mol Biol. 2021;45(1):e20210253.
Cacioppo M, Bouvier S, Bailly R, Houx L, Lempereur M, Mensah‐Gourmel J. Emerging health challenges for children with physical disabilities and their parents during the COVID‐19 pandemic: The ECHO French survey. Ann. Phys. Rehabil. Med. 2020;64(3):101429.
Grumi S, Provenzi L, Gardani A, Aramini V, Dargenio E, Naboni C, Vacchini V, Borgatti R, Engaging with Families through On-line Rehabilitation for Children during the Emergency (EnFORCE) Group. Rehabilitation services lockdown during the COVID-19 emergency: the mental health response of caregivers of children with neurodevelopmental disabilities. Disability and Rehabilitation. 2021;43(1):27-32.
Trivisano M, Specchio N, Pietrafusa N, Calabrese C, Ferretti A, Ricci R, Renzetti T, Raponi M, Vigevano F. Impact of COVID‐19 pandemic on pediatric patients with epilepsy—The caregiver perspective. Epilepsy Behav. 2020;23:79-86.