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

Eliza Gordon-Lipkin; Shannon Kruk; Elizabeth Thompson; Philip Yeske; Lori Martin; Michio Hirano; Bruce H Cohen; Christopher Steven Marcum; Peter J McGuire

doi:10.1016/j.ymgmr.2021.100837

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

Mol Genet Metab Rep. 2022 Mar:30:100837. doi: 10.1016/j.ymgmr.2021.100837. Epub 2021 Dec 18.

Authors

Eliza Gordon-Lipkin¹, Shannon Kruk¹, Elizabeth Thompson¹, Philip Yeske², Lori Martin³, Michio Hirano⁴, Bruce H Cohen⁵, Christopher Steven Marcum⁶, Peter J McGuire¹

Affiliations

¹ Metabolism, Infection and Immunity Section, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, United States of America.
² United Mitochondrial Disease Foundation, Pittsburgh, PA, United States of America.
³ People Against Leigh Syndrome, Houston, TX, United States of America.
⁴ H Houston Merritt Clinical Research Center, Columbia University Medical Center, New York, NY, United States of America.
⁵ Department of Pediatrics, Akron Children's Hospital, Akron, OH, United States of America.
⁶ Office of Data Science and Emerging Technologies, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD, United States of America.

Abstract

Background: A challenge during the COVID-19 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 COVID-19 (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 COVID-19 testing (b = -2.14,p < 0.01) were associated with fewer RMBs.

Conclusions: Our results suggest that during the COVID-19 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.

Keywords: Behavior; COVID-19; Infection; Mitochondrial; Mitochondrial Disease; Pandemic; Risk.