The COVID-19 pandemic restrictions affect the healthcare and health status of paediatric patients with neuromuscular diseases: a developing country perspective.

ABSTRACT

PURPOSE: The COVID-19 pandemic has forced the rapid and unprecedented reorganisation of current practices in the treatment of neuromuscular disorders (NMD). Cessation of care and treatments can worsen the underlying condition, exacerbate symptoms, and increase anxiety, leading to a vicious circle and increased management concerns. This study aims to determine the changes in healthcare and health status of children with NMD from a developing country perspective. MATERIALS AND METHODS: Forty-seven children with NMD were included in this cross-sectional study. The participants were contacted via phone call. The survey conducted for the study was included demographic data, changes and problems in healthcare, perceived health status change, and satisfaction with the services provided. Descriptive statistics were used to characterise the sample. RESULTS: The mean age of the children was 7.86 ± 3.45 years. The participants encountered 24.83 ± 26.54% of difficulties in getting medication care, and there was 69.95 ± 24.47% disruption in accessing routine medical care. The participants' rehabilitation sessions were disrupted in the 78.54 ± 14.93%, and there were 95.83 ± 10.03% deficiencies in therapists' informing. Children with NMD indicated that their perceived health status decreased compared to before pandemic in all parameters. CONCLUSION: This study highlights the unfavourable indirect effect of the COVID-19 pandemic restrictions on healthcare and health status of paediatric patients with NMD. Since the COVID-19 pandemic is an uncertain process, the solutions or modifications should be promptly put into effect to improve the healthcare and health status of children with NMD.