Risk mitigation behaviors to prevent infection in the mitochondrial disease community during the COVID-19 pandemic

Abstract

Background A challenge during the COVID19 pandemic has been widespread adherence to risk-reducing behaviors. Individuals with mitochondrial disease (MtD) are special population with an increased risk of morbidity associated with infection. Purpose To measure risk mitigation behaviors (RMBs) in families affected by MtD and identify factors that may influence these behaviors. Methods An online questionnaire was distributed in April and June 2020. Individuals with MtD or their caregivers completed the survey. Results We received 529 eligible responses with n = 312 completing all questions for our multivariate regression model. The most common RMBs were increased hand washing (96%), social distancing (94%), and avoiding public gatherings (93%). Higher numbers of recent healthcare visits (b = 0.62, p < 0.05) and expressed fear of the MtD patient contracting COVID19 (b = 0.92, p < 0.05) were associated with more RMBs. Living in a rural community (b = −0.99,p < 0.05) and a history of COVID19 testing (b = −2.14,p < 0.01) were associated with fewer RMBs. Conclusions Our results suggest that during the COVID19 pandemic, families affected by MtD have near universal adherence to basic RMBs. This may be motivated by fear of the severe morbidity associated with infection in MtD. Patients with frequent healthcare visits may be sicker and therefore take more precautions. Living in a rural community may also impact these behaviors. People who practice fewer RMBs may be more likely to seek testing. Our findings may generalize to other chronic diseases.

Short report: Vaccine attitudes in the age of COVID-19 for a population of children with mitochondrial disease

“…Vaccine hesitancy in this community was more prevalent toward the COVID-19 vaccine than toward other routine childhood vaccinations. While other studies have reported an association between receipt of the annual flu vaccine and COVID-19 vaccine compliance, our population demonstrated a dichotomy of high flu shot compliance but also high COVID-19 vaccine hesitancy ( Phan et al, 2022 , Gordon-Lipkin et al, 2022 ). Only half of families felt that the benefits of the vaccine outweigh the risks and many families expressed concern that their child will deteriorate as a result of vaccination.…”

“…A questionnaire was designed by an expert panel at our institution including specialists in neurodevelopmental disabilities, genetics, infectious disease and sociology. Questions were based on prior surveys from this group as well as publicly available vaccine questionnaires from Pew Research and the National Foundation for Infectious Disease ( Gordon-Lipkin et al, 2022 ). We deployed the questionnaire via a cloud-based platform through MtD patient advocacy groups, including, the United Mitochondrial Disease Foundation (UMDF), People Against Leigh Syndrome, and the North American Mitochondrial Disease Consortium.…”

“…All groups serve communities primarily in the United States. The largest of these groups (UMDF) represents approximately ten percent of families affected by MtD in the United States ( Gordon-Lipkin et al, 2022 , Schaefer et al, 2019 ). Each group distributed an invitation to participate via their email listserv and social media, which included a link to a cloud-based survey.…”

Comprehensive profiling of the human viral exposome in households containing an at‐risk child with mitochondrial disease during the 2020–2021 COVID‐19 pandemic

“…36 Of note, the viral infections documented in the households for this study were similar to a multi-year cohort of paediatric healthy controls recently published. 37 Our VirScan and SARS-CoV-2 studies indicate that despite adherence to RMBs during the COVID-19 pandemic by families with a child with MtD, 38 viral infection is pervasive.…”

Undiagnosed COVID-19 in households with a child with mitochondrial disease

“…Recently, we showed that families affected by MtD display high levels of adherence to these risk mitigation behaviors (RMBs) during the pandemic, likely due to fear of potential sequelae associated with infection. 8 Despite these high levels of adherence amongst the MtD community, the home can still act as a hub for infection from household members 9 , many of which may be undiagnosed. 10 As such, we hypothesized high penetrance of COVID-19 into households in the pediatric MtD community.…”