Outcome of COVID-19 infections in patients with adrenal insufficiency and excess

Nowotny, H.; Bryce, Jillian; Ali, Salma; Giordano, Roberta; Baronio, Federico; Chifu, Irina; Tschaidse, Lea; Cools, Martine; Akker, Erica L T van den; Falhammar, Henrik; Appelman‐Dijkstra, Natasha M.; Persani, Luca; Beccuti, Guglielmo; Ross, Ian Louis; Grozinsky‐Glasberg, Simona; Pereira, Alberto M; Husebye, Eystein S.; Hahner, Stefanie; Ahmed, S Faisal; Reisch, Nicole

doi:10.1530/ec-22-0416

Cited by 9 publications

(12 citation statements)

References 42 publications

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“…Respondents who acquired the infection described a mild disease, with few requiring hospitalization or critical care and only 1 death reported. A mild course of COVID-19 infections has been reported among patients with hereditary hemorrhagic telangiectasia in Italy [ 50 ], rare endocrine diseases in a European registry study [ 38 ], lysosomal storage diseases in London [ 79 ], and Gaucher disease in New York [ 42 ]; in a large group of patients with RD in Brazil [ 43 ]; and among people with myasthenia gravis in a subanalysis of this survey [ 52 ]. These reassuring findings are in contrast with higher COVID-19–related mortality among patients with RD in Hong Kong hospitals compared with in-patients from the general population [ 37 ] and people with neurological and neurodevelopmental diseases in a Genomics England cohort study [ 33 ].…”

Section: Discussionmentioning

confidence: 96%

Impact of the COVID-19 Pandemic on People Living With Rare Diseases and Their Families: Results of a National Survey

Macaluso,

Rothenberg,

Ferkol

et al. 2024

JMIR Public Health Surveill

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Background With more than 103 million cases and 1.1 million deaths, the COVID-19 pandemic has had devastating consequences for the health system and the well-being of the entire US population. The Rare Diseases Clinical Research Network funded by the National Institutes of Health was strategically positioned to study the impact of the pandemic on the large, vulnerable population of people living with rare diseases (RDs). Objective This study was designed to describe the characteristics of COVID-19 in the RD population, determine whether patient subgroups experienced increased occurrence or severity of infection and whether the pandemic changed RD symptoms and treatment, and understand the broader impact on respondents and their families. Methods US residents who had an RD and were <90 years old completed a web-based survey investigating self-reported COVID-19 infection, pandemic-related changes in RD symptoms and medications, access to care, and psychological impact on self and family. We estimated the incidence of self-reported COVID-19 and compared it with that in the US population; evaluated the frequency of COVID-19 symptoms according to self-reported infection; assessed infection duration, complications and need for hospitalization; assessed the influence of the COVID-19 pandemic on RD symptoms and treatment, and whether the pandemic influenced access to care, special food and nutrition, or demand for professional psychological assistance. Results Between May 2, 2020, and December 15, 2020, in total, 3413 individuals completed the survey. Most were female (2212/3413, 64.81%), White (3038/3413, 89.01%), and aged ≥25 years (2646/3413, 77.53%). Overall, 80.6% (2751/3413) did not acquire COVID-19, 2.08% (71/3413) acquired it, and 16.58% (566/3413) did not know. Self-reported cases represented an annual incidence rate of 2.2% (95% CI 1.7%-2.8%). COVID-19 cases were more than twice the expected (71 vs 30.3; P<.001). COVID-19 was associated with specific symptoms (loss of taste: odds ratio [OR] 38.9, 95% CI 22.4-67.6, loss of smell: OR 30.6, 95% CI 17.7-53.1) and multiple symptoms (>9 symptoms vs none: OR 82.5, 95% CI 29-234 and 5-9: OR 44.8, 95% CI 18.7-107). Median symptom duration was 16 (IQR 9-30) days. Hospitalization (7/71, 10%) and ventilator support (4/71, 6%) were uncommon. Respondents who acquired COVID-19 reported increased occurrence and severity of RD symptoms and use or dosage of select medications; those who did not acquire COVID-19 reported decreased occurrence and severity of RD symptoms and use of medications; those who did not know had an intermediate pattern. The pandemic made it difficult to access care, receive treatment, get hospitalized, and caused mood changes for respondents and their families. Conclusions Self-reported COVID-19 was more frequent than expected and was associated with increased prevalence and severity of RD symptoms and greater use of medications. The pandemic negatively affected access to care and caused mood changes in the respondents and family members. Continued surveillance is necessary.

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Section: Discussionmentioning

confidence: 96%

Impact of the COVID-19 Pandemic on People Living With Rare Diseases and Their Families: Results of a National Survey

Macaluso,

Rothenberg,

Ferkol

et al. 2024

JMIR Public Health Surveill

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“…There are very few studies on the outcome of patients with AI and COVID-19 during the pandemic. Eight crosssectional studies have described self-reported outcome in patients with AI during suspected COVID-19 infection [15][16][17][18][19][20][21][22]. One of the studies, which included patients with benign pituitary lesions without AI as controls, reported no difference between patients with AI compared with patients without AI with respect to symptoms or hospitalization at the start of the pandemic [15].…”

Section: Discussionmentioning

confidence: 99%

“…Data on outcome following COVID-19 infections in patients with AI are sparse due to the rarity of the disorder, and evidence is limited by small sample sizes, heterogeneity in terms of study designs and a general lack of matched control groups [15][16][17][18][19][20][21][22]. The aim of this study was therefore to investigate the risk of contracting COVID-19, as well as the risk of hospital admission, intensive care and death due to COVID-19, in a nationwide unselected cohort of patients with AI.…”

Section: Introductionmentioning

confidence: 99%

Increased risk of hospitalization, intensive care and death due to COVID‐19 in patients with adrenal insufficiency: A Swedish nationwide study

Bergthorsdottir,

Esposito,

Olsson

et al. 2023

J Intern Med

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BackgroundPatients with adrenal insufficiency (AI) have excess morbidity and mortality related to infectious disorders. Whether patients with AI have increased morbidity and mortality from COVID‐19 is unknown.MethodsIn this linked Swedish national register‐based cohort study, patients with primary and secondary AI diagnosis were identified and followed from 1 January 2020 to 28 February 2021. They were compared with a control cohort from the general population matched 10:1 for age and sex. The following COVID‐19 outcomes were studied: incidence of COVID‐19 infection, rates of hospitalization, intensive care admission and death. Hazard ratios (HR) with 95% confidence intervals (95% CI) adjusted for socioeconomic factors and comorbidities were estimated using Cox regression analysis.ResultsWe identified 5430 patients with AI and 54,300 matched controls: There were 47.6% women, mean age was 57.1 (standard deviation 18.1) years, and the frequency of COVID‐19 infection was similar, but the frequency of hospitalization (2.1% vs. 0.8%), intensive care (0.3% vs. 0.1%) and death (0.8% vs. 0.2%) for COVID‐19 was higher in AI patients than matched controls. After adjustment for socioeconomic factors and comorbidities, the HR (95% CI) was increased for hospitalization (1.96, 1.59–2.43), intensive care admission (2.76, 1.49–5.09) and death (2.29, 1.60–3.28).ConclusionPatients with AI have a similar incidence of COVID‐19 infection to a matched control population, but a more than twofold increased risk of developing a severe infection or a fatal outcome. They should therefore be prioritized for vaccination, antiviral therapy and other appropriate treatment to mitigate hospitalization and death.

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“…In addition to being a registry platform that minimises reporting burden, the platform can also be adapted to serve the needs of several networks that are interested in understanding the occurrence of multiple rare conditions or events. For instance, during the recent COVID-19 pandemic, the e-REC platform was used to collect essential data concerning specific groups of patients with rare endocrine conditions, who were also affected by COVID-19 ( 15 ). Thus, e-REC can be used for continued surveillance of conditions or for a fixed period.…”

Section: Discussionmentioning

confidence: 99%

Electronic reporting of rare endocrine conditions within a clinical network: results from the EuRRECa project

Ali,

Bryce,

Priego-Zurita

et al. 2023

Endocrine Connections

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Objective The European Registries for Rare Endocrine Conditions (EuRRECa, eurreb.eu) includes an e-reporting registry (e-REC) used to perform surveillance of conditions within the European Reference Network (ERN) for rare endocrine conditions (Endo-ERN). The aim of this study was to report the experience of e-REC over the 3.5 years since its launch in 2018. Methods Electronic reporting capturing new encounters of Endo-ERN conditions was performed monthly through a bespoke platform by clinicians registered to participate in e-REC from July 2018 to December 2021. Results The number of centres reporting on e-REC increased to a total of 61 centres from 22 countries. A median of 29 (range 11, 45) paediatric and 32 (14, 51) adult centres had reported cases monthly. A total of 9715 and 4243 new cases were reported in adults (age ≥18 years) and children, respectively. In children, sex development conditions comprised 40% of all reported conditions and transgender cases were most frequently reported, comprising 58% of sex development conditions. The median number of sex development cases reported per centre per month was 0.6 (0, 38). Amongst adults, pituitary conditions comprised 44% of reported conditions and pituitary adenomas (69% of cases) were most commonly reported. The median number of pituitary cases reported per centre per month was 4 (0.4, 33). Conclusions e-REC has gained increasing acceptability over the last 3.5 years for capturing brief information on new encounters of rare conditions and shows wide variations in the rate of presentation of these conditions to centres within a reference network. Significance statement Endocrinology includes a very wide range of rare conditions and their occurrence is often difficult to measure. By using an electronic platform that allowed monthly reporting of new clinical encounters of several rare endocrine conditions within a defined network that consisted of several reference centres in Europe, the EuRRECa project shows that a programme of e-surveillance is feasible and acceptable. The data that have been collected by the e-reporting of rare endocrine conditions (e-REC) can allow the continuous monitoring of rare conditions and may be used for clinical benchmarking, designing new studies or recruiting to clinical trials.

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Outcome of COVID-19 infections in patients with adrenal insufficiency and excess

Cited by 9 publications

References 42 publications

Impact of the COVID-19 Pandemic on People Living With Rare Diseases and Their Families: Results of a National Survey

Impact of the COVID-19 Pandemic on People Living With Rare Diseases and Their Families: Results of a National Survey

Increased risk of hospitalization, intensive care and death due to COVID‐19 in patients with adrenal insufficiency: A Swedish nationwide study

Electronic reporting of rare endocrine conditions within a clinical network: results from the EuRRECa project

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