We, as parent caregivers, write to you on behalf of 247 parents of children with chronic, complex, medical conditions from various locations across the United States. We are parent caregivers of a unique population of fun, bright, and talented children with incredibly complicated medical issues. Our children are unique; they do not follow a standard, 1-dimensional, format of care. They need constant, specialized, and coordinated care, and they rely on you to support their quality of life.Parenting a child with complex medical needs is a constant challenge that lacks a training manual. Our children arediagnosedwithanaverageof10medicalconditionsand are cared for by an average of 13 outpatient physicians and 6subspecialists.Manychildrenrequirelife-sustainingtechnology to manage their medical needs. Ironically, the primary responsibility to coordinate this care and to navigate the health care system is left to the parents.We, as parents, are the voices of our children. Those voices, however, are often muted by judgment or lack of understanding from many health care clinicians. Partnering with researchers from Franciscan Children's in Brighton, Massachusetts, on a Patient-Centered Outcomes Research Institute engagement project, 1 we identified and quantified the health care obstacles that parents routinely encounter during the course of medical care for their children. A series of 735 surveys were completed across 15 months,andparentsrankedcoordinationofcareandcaregiver stress among the most challenging issues.We write to help our children's physicians, who are vital links to their future, understand some of these issues. We consolidated the most compelling survey responses below. Please hear our voices and work with us to help our children live their best lives.
Autopsies of patients who have died from COVID‐19 have been crucial in delineating patterns of injury associated with SARS‐CoV‐2 infection. Despite their utility, comprehensive autopsy studies are somewhat lacking relative to the global burden of disease, and very few comprehensive studies contextualize the findings to other fatal viral infections. We developed a novel autopsy protocol in order to perform postmortem examinations on victims of COVID‐19 and herein describe detailed clinical information, gross findings, and histologic features observed in the first 16 complete COVID‐19 autopsies. We also critically evaluated the role of ancillary studies used to establish a diagnosis of COVID‐19 at autopsy, including immunohistochemistry (IHC), in situ hybridization (ISH), and electron microscopy (EM). IHC and ISH targeting SARS‐CoV‐2 were comparable in terms of the location and number of infected cells in lung tissue; however, nonspecific staining of bacteria was seen occasionally with IHC. EM was unrevealing in blindly sampled tissues. We then compared the clinical and histologic features present in this series to six archival cases of fatal seasonal influenza and six archival cases of pandemic influenza from the fourth wave of the ‘Spanish Flu’ in the winter of 1920. In addition to routine histology, the inflammatory infiltrates in the lungs of COVID‐19 and seasonal influenza victims were compared using quantitative IHC. Our results demonstrate that the clinical and histologic features of COVID‐19 are similar to those seen in fatal cases of influenza, and the two diseases tend to overlap histologically. There was no significant difference in the composition of the inflammatory infiltrate in COVID‐19 and influenza at sites of acute lung injury at the time of autopsy. Our study underscores the relatively nonspecific clinical features and pathologic changes shared between severe cases of COVID‐19 and influenza, while also providing important caveats to ancillary methods of viral detection.
No abstract
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.