NCC has released the third edition of the ESRD Patient Transplant Toolkit: Is a Kidney Transplant Right for Me? Patients share their transplant stories, including the risks and rewards of their experiences and insights they wish they had along the way. The Toolkit was designed by patients for patients. You can use this guide with your care team and loved ones as you learn to navigate the process to a kidney transplant. Find it at https://esrdnetworks.org/toolkits/patient-toolkits/is-a-kidney-transplant-right-for-me/at_download/file.
The National Forum of ESRD Networks has published introductory guides to the Dialysis Facility Compare (DFC) internet application that compares facilities on their general characteristics (such as whether they offer home dialysis or stay open after 5 pm), their quality of care (such as how they compare to other facilities on infection control), and the experience of their patients (such as whether patients found their doctors to be caring and to communicate well).
The guides describe what, why, and how a patient might use DFC. Find them at:
Find DFC itself at https://www.medicare.gov/dialysisfacilitycompare/.
MEI has updated the most popular module, Module 9: Nutrition and Fluids for People on Dialysis, in it’s award-winning Kidney School. The new Module 9 has been completely updated with new information about the value of eating real food, phosphorus absorption from food additives vs. meat and plants, graphics and photos, and brand-new meal plans and recipes, and was reviewed by expert renal dietitians. A Spanish translation will be available soon.
Kidney School offers free, tailored education for people with stages 4-5 CKD. Sixteen interactive modules at the 6th grade reading level help patients and family members learn about kidney disease, treatment options, coping skills, lab tests, diet and nutrition, and much more. Each online module creates a Personal Action Plan. Audio files and PDFs in English and Spanish are also available. Continuing education credits are available for professionals.
We’ve published our Patient Newsletters for Winter 2020. They feature articles on treatment options, flu shots, grievances, access to care, how to stay informed by the Network, and how to help the Network improve patient care. Find them at:
- Network 16 in Spanish: https://s3-us-west-2.amazonaws.com/nwrn.org/files/N2/Win2020NW16PNLEsp.PDF.
The US Renal Data System (USRDS) 2019 Annual Data Report: Epidemiology of Kidney Disease in the United States has been released on paper. The online version was released in November 2019. Find the Report at https://www.ajkd.org/issue/S0272-6386(19)X0003-7, and the USRDS ADR page at https://www.usrds.org/adr.aspx.
The Annual Data Report of the OPTN and SRTR (the US Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients) is now available, documenting data pertaining to the period 2007-2018. Find it at https://srtr.transplant.hrsa.gov/annual_reports/2018_ADR_Preview.aspx. Find the OPTN home page at https://optn.transplant.hrsa.gov/ and SRTR at https://www.srtr.org/.
The United Network for Organ Sharing (UNOS) has published new vision and mission statements. Find them at https://unos.org/news/introducing-unos-new-mission-and-vision/.
Kidneys Quest Foundation will present a free in-person one-day 2020 Kidney Disease Impact Conference in Los Angeles on March 4, 2020. Conference topics will include improving renal health, preventing kidney failure, expanding options for kidney patients, dialysis, home dialysis, research, clinical trials, increasing available organs for transplant, transplant support, becoming a living donor, CKD and CVD, and pediatric CKD.
Invitation is extended to renal patients, social workers, registered nurses, dietitians, dialysis technicians, medical directors, administrators and organization managers, healthcare workers, friends and family of patients, and anyone interested in kidney disease and dialysis. Attendance and onsite parking is free, and continental breakfast and lunch will be provided. Continuing education credits for nurses, social workers, dietitians, and dialysis technicians are available for a $50 fee. Pre-registration is required, and space is limited. Register at:
- https://events.r20.constantcontact.com/register/eventReg?oeidk=a07egu68tk72e9b31a2&oseq=&c=&ch= for those who want CE credit.
- https://events.r20.constantcontact.com/register/eventReg?oeidk=a07egu6bqw6f4f810f0&oseq=&c=&ch= for all others.
Find complete details, including the Conference agenda and sponsor registration information, at http://kidneysquestfoundation.org/2020-kidney-disease-impact-conference.html.
Dialysis Patient Citizens will present a November 21, 2019 webinar on Treatments and Modality Options for Kidney Disease. For details see below, and register at https://www.dpcedcenter.org/news-events/education-webinars/signup/.
Dialysis Patient Citizens will present an October 17, 2019 webinar on Decisions You Need to Make about Your Transplant Choice. The webinar will cover high risk donors, the transplant waitlist, and how to be a “great transplant recipient.” RSVP at https://www.dpcedcenter.org/news-events/education-webinars/. This is short notice, but the webinar will be recorded, and when the recording is ready you can find a link to it at the same web page, along with past webinars on topics like diabetes, employment, exercise, medications, laughter, support, and many others. The next monthly webinar, on November 21, will be about Treatments and Modality Options for Kidney Disease. There’s no date set yet, but the December webinar will be on Kidney Nutrition. Find more details and RSVP for current and future webinars at https://www.dpcedcenter.org/news-events/education-webinars/signup/.
Home Dialysis Central has published a blog post on Traditional Dialysis vs. Transitional Care for Urgent Starts. Transitional Care for Urgent Starts (TCU) provides a gentler and more supportive introduction to dialysis for people whose kidneys fail with little warning, helping them get past the shock of a “sudden” change of just about everything in their life, and helping them make informed decisions about treatment modality. Of course kidneys don’t fail suddenly, but sometimes it seems that way to the person whose kidneys have failed. Find the post at https://homedialysis.org/news-and-research/blog/330-traditional-dialysis-vs-transitional-care-for-urgent-starts.
The ANNA Special Practice Networks have published a series of several-page Fact Sheets on a number of topics:
- Peritoneal Dialysis Fact Sheet at https://www.annanurse.org/download/reference/practice/pdFactSheet.pdf.
- Pediatric Peritoneal Dialysis Fact Sheet at https://www.annanurse.org/download/reference/practice/pedPDFactSheet.pdf.
- AKI Fact Sheet on Clinical Issues at https://www.annanurse.org/download/reference/practice/akiClinicalFactSheet.pdf.
- AKI Fact Sheet on Financial/Payment/Billing Issues at https://www.annanurse.org/download/reference/practice/akiFinancialFactSheet.pdf.