Dataset Information

Effect of the COVID-19 Pandemic on Children With SMA Receiving Nusinersen: What Is Missed and What Is Gained?

ABSTRACT: Nusinersen is the first oligonucleotide-based drug that is approved for the treatment of spinal muscular atrophy. In January 2020, the WHO declared COVID-19 a pandemic and nusinersen-provider centers had to postpone planned infusions for some children along with other related interventions. Considering the important contribution that the intrathecal infusions and other support activities could have on the quality of life of spinal muscular atrophy patients and their families, this emergency could have a relevant impact on the course of the pathology. The present work aims to assess the clinical and social issues that arise for spinal muscular atrophy children in care at the referral pediatric palliative care Centre of Padua (Veneto) from a delay in nusinersen infusions, resulting from the contingent COVID-19 restrictions. This evaluation has been carried out in both the short and long term after the first lockdown period and can be considered as a "proxy" of a situation of a possible delay in administration or management of infusions, due to other different causes.

SUBMITTER: Agosto C

PROVIDER: S-EPMC8491612 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature

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Effect of the COVID-19 Pandemic on Children With SMA Receiving Nusinersen: What Is Missed and What Is Gained?

Agosto Caterina C Salamon Eleonora E Giacomelli Luca L Papa Simonetta S Benedetti Francesca F Benini Franca F

Frontiers in neurology 20210921

Nusinersen is the first oligonucleotide-based drug that is approved for the treatment of spinal muscular atrophy. In January 2020, the WHO declared COVID-19 a pandemic and nusinersen-provider centers had to postpone planned infusions for some children along with other related interventions. Considering the important contribution that the intrathecal infusions and other support activities could have on the quality of life of spinal muscular atrophy patients and their families, this emergency coul ...[more]

PMID: 34621235

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Project description:The Government of Bangladesh imposed a movement control order as a mass quarantine strategy to control the outbreak of coronavirus disease 2019 (COVID-19). Adherence to the home quarantine may put children at risk by missing routine vaccination. In this study, we investigated the impact of COVID-19 on child routine immunization in a rural area of Bangladesh and consider the broader implications. Data for this study comes from the Chakaria Health and Demographic Surveillance System (HDSS) of icddr,b with a population of 90,000 people residing in 16,000 households in 49 villages in a rural, coastal area of Southeast Bangladesh. We used an explanatory sequential mixed methods design which involved two phases between March 1, 2020, and May 31, 2020: first, we observed 258 outreach sessions of 86 EPI centers. We calculated the number of Expanded Program on Immunization (EPI) outreach sessions suspended and the number of children who missed their routine vaccination due to the COVID-19. We extrapolated the number of Bangladeshi children who missed their routine vaccination using Chakaria HDSS observations. Secondly, we conducted in-depth interviews to explain the quantitative results. The EPI outreach session (EOS) declined to 74.42% (95% CI 63.97-83.22), 10.45% (95% CI 5.00-18.94), and 3.45% (95% CI 1.00-9.75) from 2019 levels in March, April, and May 2020, respectively. By extrapolation, in Bangladesh, between March and May 2020, 3.2 million children missed their scheduled vaccination compared to 2019. Results from in-depth interviews showed that the unwillingness of villagers to hold EOS and the absenteeism of the vaccinators due to social distancing recommendations and lack of personal safety measures were the main reasons for the discontinuation of the EOS. Resuming EPI outreach sessions and introducing a special catch-up program is essential to prevent future outbreaks and deaths due to vaccine-preventable diseases in Bangladesh and the countries where children missed their routine vaccination due to COVID-19. This health system failure should be considered a factor in all future pandemic preparedness plans.

Project description:Background COVID-19 had affected the health-care-seeking behavior of people with chronic medical conditions. The impact is even worse in resource-limited settings like Ethiopia. Therefore, this study was aimed to assess the extent and correlates of missed appointments among adults with chronic disease conditions before and during the COVID-19 pandemic in the Northwest Ethiopia. Methods A retrospective chart review and cross-sectional survey were conducted from December 2020 to February 2021. A total of 1833 patients with common chronic disease were included by using a stratified systematic random sampling technique. Web-based data collection was done using Kobo collect. The data were explored using descriptive statistical techniques, the rate of missed appointments s before and during the COVID-19 pandemic was determined. A negative binomial regression model was fitted to identify the factors of missed appointment. An incidence rate ratio with its 95% confidence interval (CI) and p-value of the final model were reported. Results The rate of missed appointments was 12.5% (95% CI: 11.13%, 14.20%) before the pandemic, increased to 26.8% (95% CI: 24.73%, 28.82%) during the pandemic (p-value < 0.001). Fear of COVID-19 infection and lack of transport was the most common reasons for missing appointments. Older patients (Adjusted Incidence Rate Ratio (AIRR) = 1.01, 95% CI: 1.001; 1.015), having treatment follow up more than 5 years (AIRR = 1.36, 95%CI: 1.103; 1.69), shorter frequency of follow-up (AIRR = 2.22, 95% CI: 1.63; 2.49), covering expense out of pocket (AIRR = 2.26, 95%CI: 1.41; 2.95), having a sedentary lifestyle (AIRR = 1.36, 95%CI: 1.12; 1.71), and history of missed appointments before COVID-19 pandemic (AIRR = 4.27, 95%CI: 3.35; 5.43) were positively associated with the incidence of missed appointments. Conclusion The rate of missed appointment increased significantly during the COVID-19 pandemic. Older age, longer duration of follow up, more frequent follow-up, out-of-pocket expenditure for health service, history of poor follow-up, and sedentary lifestyle had positive relationship with missed appointments during the pandemic. Therefore, it is important to give special emphasis to individuals with these risk factors while designing and implementing policies and strategies for peoples with chronic diseases to ensure the continuity of care and to avoid the long-term impact on their health.

Dataset Information

Effect of the COVID-19 Pandemic on Children With SMA Receiving Nusinersen: What Is Missed and What Is Gained?

Publications

Effect of the COVID-19 Pandemic on Children With SMA Receiving Nusinersen: What Is Missed and What Is Gained?

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