Invisible burden of COVID-19: enzyme replacement therapy disruptions

Author:

Kahraman Ayça Burcu1ORCID,Yıldız Yılmaz1ORCID,Çıkı Kısmet1,Akar Halil Tuna1ORCID,Erdal İzzet1,Dursun Ali1,Tokatlı Ayşegül1,Sivri Hatice Serap1

Affiliation:

1. Department of Pediatrics , Hacettepe University Faculty of Medicine, Pediatric Metabolism and Nutrition Unit , Ankara , Turkey

Abstract

Abstract Objectives Lysosomal storage diseases (LSD) constitute an important group of metabolic diseases, consisting of approximately 60 disorders. In some types of lysosomal diseases, enzyme replacement therapy (ERT) is administered intravenously in weekly or biweekly doses. Unfortunately, scheduled ERT during COVID-19 was disrupted. We considered the possibility of adverse outcomes caused by the disruption in the treatment of patients with lysosomal storage disorders. Methods During the COVID-19 pandemic, we conducted a questionnaire that was delivered via Internet to assess how this vulnerable patient group was affected by the pandemic in terms of their access to treatment and their disease-related symptoms. Results The questionnaire was filled out by 75 patients. There were 35 patients whose treatment dose was missed because of COVID-19. The most common reason for skipping treatment was not wanting to go to the hospital for fear of contracting COVID-19. These 35 patients missed a median of four doses of ERT (range: 1–16 dosages). Twenty-one patients (60%) claimed that they were affected physically by not taking ERT (20 mucopolysaccaridoses, 1 Fabry disease), whereas 14 (40%) did not. Conclusions Interruption of ERT during the COVID-19 pandemic may have significant consequences. It may be beneficial to switch to home treatment or reserve dedicated facilities. With proper planning and management, the treatment disruptions of this particular group can be avoided.

Publisher

Walter de Gruyter GmbH

Subject

Endocrinology,Endocrinology, Diabetes and Metabolism,Pediatrics, Perinatology and Child Health

Reference26 articles.

1. Esakandari, H, Nabi-Afjadi, M, Fakkari-Afjadi, J, Farahmandian, N, Miresmaeili, SM, Bahreini, E. A comprehensive review of COVID-19 characteristics. Biol Proced Online 2020;22:19.

2. World Health Organization. WHO Director-General’s opening remarks at the media briefing on COVID-19. Available from: https://www.who.int/director-general/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing-on-covid-19---11-march-2020 [Accessed 22 Dec 2020].

3. Worldometer. Coronavirus cases. Available from: https://www.worldometers.info/coronavirus/ [Accessed 31 Jan 2021].

4. Republic of Turkey, Ministry of Interior. Circular letter on the curfew for those 65 years and over and those with chronic illnesses. Available from: https://www.icisleri.gov.tr/65-yas-ve-ustu-ile-kronik-rahatsizligi-olanlara-sokaga-cikma-yasagi-genelgesi# [Accessed 16 Sep 2020].

5. Kim, L, Whitaker, M, O’Halloran, A, Kambhampati, A, Chai, SJ, Reingold, A, et al.. Hospitalization rates and characteristics of children aged <18 years hospitalized with laboratory-confirmed COVID-19 – COVID-NET, 14 states, March 1-July 25, 2020. MMWR Morb Mortal Wkly Rep 2020;69:1081–8.

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