摘要
Hereditary haemorrhagic telangiectasia (HHT) is a complex, multisystemic vascular dysplasia affecting approximately 85,000 European Citizens. In 2016, eight founding centres operating within 6 countries, set up a working group dedicated to HHT within what became the European Reference Network on Rare Multisystemic Vascular Diseases. By launch, combined experience exceeded 10,000 HHT patients, and Chairs representing 7 separate specialties provided a median of 24 years' experience in HHT. Integrated were expert patients who focused discussions on the patient experience. Following a 2016-2017 survey to capture priorities, and underpinned by more than 40 monthly meetings, and new data acquisitions, VASCERN HHT generated position statements that distinguish expert HHT care from non-expert HHT practice. Leadership was by specialists in the relevant sub-discipline(s), and 100% consensus was required amongst all clinicians before statements were published or disseminated. One major set of outputs targeted all healthcare professionals and their HHT patients, and include the new Orphanet definition; Do's and Don'ts for common situations; Outcome Measures suitable for all consultations; COVID-19; and anticoagulation. The second output set span aspects of vascular pathophysiology where greater understanding will assist organ-specific specialist clinicians to provide more informed care to HHT patients. These cover cerebral vascular malformations and screening; mucocutaneous telangiectasia and differential diagnosis; anti-angiogenic therapies; circulatory interplays between anaemia and arteriovenous malformations; and microbiological strategies to counteract loss of normal pulmonary capillary function. Overall, the integrated outputs, and documented current practices, provide frameworks for approaches that augment the health and safety of HHT patients in diverse health-care settings.
主题 s
Telangiectasia, Hereditary Hemorrhagic/therapy , Disease Management , Europe , Humans , Practice Guidelines as Topic , Rare Diseases , Telangiectasia, Hereditary Hemorrhagic/diagnosis摘要
Objective: The objectives of this study were to measure the global impact of the pandemic on the volumes for intravenous thrombolysis (IVT), IVT transfers, and stroke hospitalizations over 4 months at the height of the pandemic (March 1 to June 30, 2020) compared with two control 4-month periods. Background: The COVID-19 pandemic led to widespread repercussions on the delivery of health care worldwide. Design/Methods: We conducted a cross-sectional, observational, retrospective study across 6 continents, 70 countries, and 457 stroke centers. Diagnoses were identified by ICD-10 codes and/or classifications in stroke center databases. Results: There were 91,373 stroke admissions in the 4 months immediately before compared to 80,894 admissions during the pandemic months, representing an 11.5% (95%CI,-11.7 to-11.3, p<0.0001) decline. There were 13,334 IVT therapies in the 4 months preceding compared to 11,570 procedures during the pandemic, representing a 13.2% (95%CI,-13.8 to-12.7, p<0.0001) drop. Interfacility IVT transfers decreased from 1,337 to 1,178, or an 11.9% decrease (95%CI,-13.7 to-10.3, p=0.001). There were greater declines in primary compared to comprehensive stroke centers (CSC) for stroke hospitalizations (-17.3% vs-10.3%, p<0.0001) and IVT (-15.5% vs-12.6%, p=0.0001). Recovery of stroke hospitalization volume (9.5%, 95%CI 9.2-9.8, p<0.0001) was noted over the two later (May, June) versus the two earlier (March, April) months of the pandemic, with greater recovery in hospitals with lower COVID-19 hospitalization volume, high volume stroke center, and CSC. There was a 1.48% stroke rate across 119,967 COVID-19 hospitalizations. SARS-CoV-2 infection was noted in 3.3% (1,722/52,026) of all stroke admissions. Conclusions: The COVID-19 pandemic was associated with a global decline in the volume of stroke hospitalizations, IVT, and interfacility IVT transfers. Primary stroke centers and centers with higher COVID19 inpatient volumes experienced steeper declines. Recovery of stroke hospitalization was noted in the later pandemic months, with greater recovery in hospitals with lower COVID-19 hospitalizations, high volume stroke centers, and CSCs.
摘要
Introduction: During the COVID-19 pandemic, decreased volumes of stroke admissions and mechanical thrombectomy were reported. The objective was to examine whether subarachnoid hemorrhage(SAH) hospitalizations and ruptured aneurysm coiling interventions demonstrated similar declines. Methods: We conducted a global, retrospective, observational study across 6 continents, 37 countries, and 140 comprehensive stroke centers. Patients with diagnosis of SAH, ruptured aneurysm coiling interventions, COVID-19 were identified using ICD-10 codes or by prospectively maintained stroke databases. The 3-month cumulative volume, monthly volumes for SAH hospitalizations and ruptured aneurysm coiling procedures were compared for the period before (1- year and immediately before) and during the COVID-19 pandemic (March 1 to May 31, 2020). Results: There was a significant decline in SAH hospitalizations with 2,044 admissions in the 3 months immediately before and 1,585 admissions during the pandemic, representing a decline of 22.5% (95%CI, -24.3 to -20.7, p<0.0001). Embolization of ruptured aneurysms declined with 1,170 to 1,035 procedures, respectively, representing an 11.5%(95%CI, -13.5 to -9.8, p=0.002) drop. Hospitals with higher COVID-19 hospitalization burden demonstrated greater declines in SAH and ruptured aneurysm coiling compared to lower COVID-19 burden. A relative increase in coiling of ruptured aneurysms was noted in low coiling volume hospitals of 41.1% (95%CI, 32.3-50.6, p=0.008) despite a decrease in SAH admissions in this tertile. Conclusions: There was a global decrease in subarachnoid hemorrhage admissions and ruptured aneurysm embolizations during the COVID-19 pandemic. Among low-volume coiling SAH hospitals, there was an increase in the ruptured aneurysm coiling intervention. These findings in SAH are consistent with a global decrease in other emergencies such as stroke and myocardial infarction.