Resources on COVID-19 for kidney disease patients and their families
Last updated: August 2021
It is a difficult time to be a parent of a child with chronic kidney disease or a kidney transplant. The COVID-19 pandemic has led to a radical change in our lives: school closures, shelter-in-place orders, cancellations of routine medical visits, etc. It is important, however, to put the dangers your child is facing in perspective. Your immunocompromised child may face risk from COVID-19, but their kidney transplant care is as important now as ever. Your treatment team is there for you and your child—they are doing everything they can to increase your child’s safety while ensuring patients get needed treatments. It begins by sharing what we know about COVID-19. It is important to remember that the potential harm from canceling necessary clinic visits, treatments, or testing without consulting with your medical team may be greater than the relatively low risk of catching COVID-19 in the hospital. IROC worked with fellow learning networks ACTION, Pediatric Heart Transplant Society, and Starzl Network to produce the following resource for patients and their families. We recommend you read them carefully and work with your treatment team to plan the appropriate level of care for your child.
o Back to School Safety Tips for Pediatric Solid Organ Transplantation Recipients
o COVID-19 FAQs for Children with Solid Organ Transplant or Heart Failure
o COVID-19 & Kidney Disease: Standards for Healthy Living
While IROC does not provide direct medical advice for patients, we do aim to connect people for learning and the spread of reliable health information. With this in mind, we’ve rounded up the following additional resources to help you and your family better understand COVID-19. The resources listed are updated frequently, so please check for updates.
Please be advised: Anyone seeking specific medical guidance on the novel coronavirus and its effect on their health should communicate directly with their individual care team.
Reliable COVID-19 Resources:
For Transplant Recipients
o American Society of Transplantation (AST)
AST has a brief overview of COVID-19 and a wealth of links to resources on COVID-19 and the transplantation community.
o United Network for Organ Sharing (UNOS)
UNOS has built out this web page with resources, webinars, and FAQs for patients and families living with a solid organ transplant.
For Individuals with Kidney Disease
o National Kidney Foundation (NKF)
The NKF provides an overview of COVID-19 citing information from the CDC, and includes a helpful list of kidney-friendly, shelf-stable food to have on hand.
For Clinicians
o American Society of Pediatric Nephrology (ASPN)
This ASPN page provides a wealth of COVID-19-related information, including general updates, information for dialysis centers, research, and more.
o Dr. Abanti Chaudhuri’s COVID-19 AP Call Presentation
This presentation outlines the impact COVID-19 has had on pediatric renal transplantation.
COVID-19 Dashboards
o COVID-19 Data: North American Pediatric Intensive Care Units
This is a registry of ICU admissions with COVID-19.
o Institute for Healthcare Improvement (IHI)
This IHI dashboard provides a count of COVID-19 reported deaths using Shewhart Control Charts.
Other General COVID-19 Resources:
o Centers for Disease Control and Prevention (CDC)
The CDC provides general information on COVID-19, including number of cases, symptoms, prevention, travel alerts, and community resources. The focus is on COVID-19 in the United States, though some global information is provided.
o Environmental Protection Agency (EPA)
The EPA provides a list of the best disinfectants to be used against COVID-19.
o World Health Organization (WHO)
WHO provides general information on COVID-19, including much of the same information as the CDC, but through a global lens. There is a helpful catalog of informational videos.