Summer 2020 Network Patient Newsletters

ESRD Networks 16 and 18 have prepared their Summer 2020 patient newsletters.  Major articles and sidebars for summer include:

  • COVID-19: a New World for Dialysis Patients.
  • Telehealth: How to connect virtually with your healthcare providers. 
  • Are you up to date on all your vaccines?
  • How to Report Patient Grievances.
  • How to Get Our Newsletter! and Join Our Blog!
  • Introduction to The KidneyHub.org Mobile Tool (Network 16).
  • Invitation to Get Involved! in helping the Network improve patient care (Network 18).

Find Network 16 patient newsletters, in English and Spanish, at https://nwrn.org/patients-a-family/ptedres/quarterly-patient-newsletter.html.

Find Network 18 patient newsletters, in English and Spanish, at http://www.esrdnetwork18.org/patients/newsletters/.

5/26+ COVID-19 Weekly Webinars

A number of organizations are hosting weekly webinars on COVID-19.  These include:

  • ESRD NCC half-hour “Quickinars” for providers and patients.   Find more information, recordings of past Quickinars, and register for current presentations at https://esrdncc.org/quickinars:
      • Tuesday May 26, 2020 patient Quickinar on Combating Uncertainty and Fear in the COVID-19 Era (En Español), presented by a PD patient, Network Ambassador, and patient and family engagement SME.  She will share how Spanish-speaking patients are coping with fears surrounding COVID-19, and Provide links to COVID-19 information in Spanish.
      • Wednesday May 27, 2020 provider Quickinar on COVID-19 Communication – Quick Tips to Connect, presented by the Director of Outreach and Development for the non-profit Academy of Communication in Healthcare, Editor-in-Chief for the Journal of Patient Experience, and Assistant Clinical Professor at Vanderbilt University School of Medicine.

Network Guidance on COVID-19 Stress for Staff

Networks 16 and 18 have assembled a web page on Healthcare Workers – Coping with Infectious Disease Outbreaks in the Dialysis Setting.  In addition to guidance for maintaining your own health in situations of extreme stress, it includes links to the SAMHSA Disaster Distress Helpline (in English, Spanish, and 14 other languages) and their document on Taking Care of Your Behavioral Health: Tips for Social Distancing, Quarantine, and Isolation during an Infectious Disease OutbreakFind the Network web page at http://www.esrdnetwork18.org/wp-content/uploads/20200313-Coping-with-ID-Outbreaks.pdf.  While it’s aimed at facility staff, patients will also find it useful for managing their own stress.

3/12 World Kidney Day and National Kidney Month

March 12, 2020 is World Kidney Day, sponsored by the International Society of Nephrology and the International Federation of Kidney Foundations.  This year’s theme is Kidney Health for Everyone Everywhere – from Prevention to Detection and Equitable Access to Care.  Find more information at https://www.cdc.gov/mmwr/preview/mmwrhtml/mm5808a1.htm and a campaign toolkit at https://www.worldkidneyday.org/2020-campaign/2020-campaign-materials/.

March is also National Kidney Month, with the theme Take the Pressure off Your Kidneys and Your Health.  Find more information at https://www.kidney.org/content/national-kidney-month and https://www.niddk.nih.gov/health-information/community-health-outreach/national-kidney-month.  The latter includes a campaign toolkit, including posters like the one below, in English and Spanish.

To support National Kidney Month, NKF, HHS, and ASN have launched a nationwide risk campaign called Are You the 33%?.  Find details at https://www.kidney.org/news/nationwide-kidney-risk-campaign-launched-nkf-hhs-and-asn.

“Are You the 33%?” CKD Campaign

To honor National Kidney Month (March), HHS, ASN, NKF, and private partners including CVS Kidney Care, have launched a nationwide campaign to reach the 33% of American adults who are at risk of kidney disease, and to help them avoid further development of the disease.  Find more information at https://www.kidney.org/news/nationwide-kidney-risk-campaign-launched-nkf-hhs-and-asn.  They plan to also launch a Spanish-language version on September 15, 2020 for National Hispanic Heritage Month (September 15-October 15).

Winter 2020 Patient Newsletters

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:

Hot Weather Health

The Oregon Health Authority has announced a #SummerBummer collection of strategies for Preventing and Responding to common hot-weather risks, including drowning, poor air quality, mosquito-borne and tick-borne illnesses, algal blooms, fecal beach bacteria, food poisoning, and extreme heat.  Find their recommendations at https://www.oregon.gov/oha/ERD/Pages/StaySafeHealthyWithSafetyTipsFromOHAAsSummerKicksOffJune21.aspx.

CDC has a comparable program that sends out a weekly email on Five Minutes or Less for Health Weekly Tip, which also covers skin cancer, hydration, and communicable diseases.  Review their Tips or sign up at https://www.cdc.gov/family/minutes/tips/summersavvy/index.htm.

Homeland Security’s “Ready.gov” website has a thorough discussion of how to stay cool and safe in extreme heat, at https://www.ready.gov/heat, and one to help you Prepare Your Home for Wildfire Season at https://www.ready.gov/wildfires.

And of course people with ESRD have special issues with food and water in the summer:

Diabetic Foot Care

A recent study published in the American Diabetes Association’s (ADA) journal Diabetes Care (http://care.diabetesjournals.org/content/early/2019/05/28/dc19-0296) using 2000-2015 USRDS data has shown that the rates of nontraumatic lower-extremity amputation (NLEA) among adults with ESRD and diabetes fell 44% between 2000 and 2013 from 7.5 to 4.2 NLEA per 100 person-years, while NLEA among ESRD patients without diabetes declined 31% over the same period, from 1.6 to 1.1 per 100 person-years.  Both reductions were highly statistically significant.  However, both rates flat-lined after 2013.

We want to stress the importance of improving patient and staff education on diabetes self-management and preventive foot care, in order to resume the reductions in these rates.  CDC’s recommendations on diabetic foot care can be found at https://www.cdc.gov/features/diabetesfoothealth/index.html.  The ADA’s input is at http://www.diabetes.org/living-with-diabetes/complications/foot-complications/foot-care.html in English and http://www.diabetes.org/es/vivir-con-diabetes/complicaciones/el-cuidado-de-los-pies.html in Spanish.

Online English/Spanish Treatment Options Tool

My Life, My Dialysis Choice is a free English/Spanish, values-based dialysis treatment matcher developed by the non-profit MEI and endorsed by AAKP and Home Dialyzors United.  You enter your lifestyle preferences, and My Life, My Dialysis Choice suggests treatment options most appropriate for you.  The tool is written at a 5th grade reading level and includes ALL types of dialysis.  Find My Life, My Dialysis Choice at https://mydialysischoice.org/.  It may load in either English or Spanish, but you can switch by clicking on the “English” or “Español” button in the upper left corner of the screen.