Impact of the SARS‐CoV‐2 pandemic on the health of individuals with intoxication‐type metabolic diseases—Data from the E‐IMD consortium

Abstract

The SARS-CoV-2 pandemic challenges healthcare systems worldwide. Within inherited metabolic disorders (IMDs) the vulnerable subgroup of intoxicationtype IMDs such as organic acidurias (OA) and urea cycle disorders (UCD)show risk for infection-induced morbidity and mortality. This study (observation period February 2020 to December 2021) evaluates impact on medical health care as well as disease course and outcome of SARS-CoV-2 infections in patients with intoxication-type IMDs managed by participants of the European Registry and Network for intoxication type metabolic diseases Consortium (E-IMD). Survey's respondents managing 792 patients (n = 479 pediatric; n = 313 adult) with intoxication-type IMDs (n = 454 OA; n = 338 UCD) in 14 countries reported on 59 (OA: n = 36; UCD: n = 23), SARS-CoV-2 infections (7.4%).Medical services were increasingly requested (95%), mostly alleviated by remote technologies (86%). Problems with medical supply were scarce (5%).Regular follow-up visits were reduced in 41% (range 10%-50%). Most infected individuals (49/59; 83%) showed mild clinical symptoms, while 10 patients (17%; n = 6 OA including four transplanted MMA patients; n = 4 UCD) were hospitalized (metabolic decompensation in 30%). ICU treatment was not For affiliation refer to page 10

Odimet®: A Pioneering Tele-Health Tool to Empower Dietary Treatment and the Acute Management of Inborn Errors of Metabolism—An Assessment of Its Effectiveness during the COVID Pandemic

“…To alleviate this difficulty in accessibility, the units were forced to carry out a rapid restructuring of clinical monitoring, making it clear that there is a need to have tools that allow for the remote monitoring of patients with the implementation of new telemedicine strategies. Data from the European Registry and Network for intoxication type metabolic diseases Consortium (E-IMD) indicate that regular follow-up visits for those patients were reduced by 41% during the pandemic, and the increased medical demand was mostly alleviated by remote technologies (86%) [33]. A key advantage of Odimet ® is that it facilitates real-time dietary supervision, enabling rapid and dynamic assistance in situations where there is a risk of metabolic decompensation, an aspect of particular interest in this type of IEMs.…”

COVID-19 in inherited metabolic disorders: Clinical features and risk factors for disease severity

“…Zubarioğlu et al reported four counts of SARS-CoV-2-related decompensation in 22 IMD patients (18.1%) [ 19 ]. While the vulnerability of some IMD to infections is evident, we argue that SARS-CoV-2 itself does not pose an extra burden of an acute decompensation compared to other infectious agents circulating before the pandemic [ 8 , 20 ]. It should be recognized that immune-naïve patients may experience a more severe illness and therefore carry a higher risk of metabolic decompensation.…”

“…Mütze et al reported that there is no difference with the hospitalization rates by diagnosis or age group. and, no complications specific to IMD or related to COVID-19 have been observed [ 8 ]. More information is needed on whether inherited metabolic disorders (IMD) confer risk of more severe COVID-19.…”

Expert-opinion-based guidance for the care of children with lysosomal storage diseases during the COVID-19 pandemic: An experience-based Turkey perspective

“…Most of the infected patients (83%) showed mild clinical symptoms. The survival rate during the study period was reported to be 100% ( 64 ).…”