The University of Michigan KECC is conducting an ESRD Patient Reported Outcomes Quality Initiative Project Patient Life Goals Study, and seeks dialysis patients at least 18 years old to answer a new Survey that asks about your individual life goals and your dialysis facility care team. Life goals are personal goals that you think are important to achieve, such as having the ability to go to work, go to school, travel, or spend time with family. The Study aims to improve the odds that your care team will consider your individual life goals in the treatment planning process. Find an introductory letter and the Survey at https://redcapproduction.umms.med.umich.edu/surveys/index.php?s=DT4N3P48AC. There’s an easy-to-miss check box at the bottom of this page, which you have to check before the Survey questions appear. The Survey doesn’t seem to specify an expiration date.
The Coalition for Compassionate Care of California is conducting a survey to better understand the level of interest and engagement in a state-wide electronic Registry of Physician Orders for Life-Sustaining Treatment (POLST). POLST is a form that gives seriously-ill patients more control over their end-of-life care, including medical treatment, extraordinary measures (such as a ventilator or feeding tube) and CPR. Printed on bright pink paper, and signed by both a patient and physician, nurse practitioner or physician assistant, POLST can prevent unwanted or ineffective treatments, reduce patient and family suffering, and ensure that a patient’s wishes are honored. Since it’s designed to be readily available to all healthcare practitioners in any setting or circumstance, electronic availability would promote its purpose. For more information and a sample of the California form, see https://capolst.org/. Take the survey, if possible before August 9, 2019, at https://www.surveymonkey.com/r/3XC2PGX.
The National Forum of ESRD Networks has revised the Dialysis Patient Depression Toolkit and added a video. Find the revised English version at http://esrdnetworks.org/resources/toolkits/patient-toolkits/new-toolkit-dialysis-patient-depression-toolkit/dialysis-patient-depression-toolkit-english and a Spanish version at http://esrdnetworks.org/resources/toolkits/patient-toolkits/new-toolkit-dialysis-patient-depression-toolkit/dialysis-patient-depression-toolkit-spanish. A related video interview with a dialysis patient has also been recorded. Find it at https://www.youtube.com/watch?v=N7Iv6JytQt4.
The video My Choice, Home Dialysis has been placed on YouTube where it can be accessed easily. It features patients describing the advantages of home dialysis in their own words. Find it at https://www.youtube.com/watch?v=ZquRiZ0RwSU. For subtitles:
- Click on the gear symbol (“Settings,” in the lower right)
- Click on “Subtitles/CC(2) Off >”
- Click on “Spanish – Default” or “English – Default”
YouTube can also translate subtitles into more than a hundred additional languages.
Home Dialysis Central has published a Dialysis Fluid Restriction Calculator to answer the question, “How much can I drink between dialysis sessions?” individualized for each patient. For the Calculator and discussion, see https://homedialysis.org/news-and-research/blog/265-a-new-dialysis-fluid-restriction-calculator.
Home Dialysis Central has published a summary of “organ stunning,” where dialysis removes too much water, or removes it too quickly, and your internal organs are shocked. This can damage your organs, and the damage may be cumulative. The HDC article covers the causes and processes of organ stunning, and most important, describes how you can avoid it. Find the article at https://homedialysis.org/life-at-home/articles/organ-stunning-on-hemodialysis-what-is-it-and-what-can-you-do.
Legacy Transplant Services will present four classes on Is Kidney Transplant Right for You? in Portland during 2018, on March 7, May 3, September 12, and November 8. For details see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/Legacy/LegacyTrx0318.pdf, and register at http://www.legacyhealthevents.org.
NKF and HealthUnlocked have created four new online communities to provide help, support, and information for:
- Kidney Disease Community for anyone affected by or at risk of kidney disease – https://healthunlocked.com/nkf-ckd
- Kidney Dialysis Community for support of people on dialysis – https://healthunlocked.com/nkf-dialysis
- Living Donor Community for people who have donated a kidney – https://healthunlocked.com/nkf-donors
Transplant Community for people who have had a transplant, are waiting for a transplant, or are a family member/friend/caregiver – https://healthunlocked.com/nkf-kidneytransplant
HealthUnlocked is the third largest health website in the UK and in the top 20 globally. With over 40 million users per year in over 500 unique communities, the HealthUnlocked website increases patient engagement and contributes to improved health outcomes through its online health and well-being forums. https://healthunlocked.com/ is a social platform and mobile application with moderated online health communities in which visitors can access useful information and services; seek advice, support and mentoring from peers; be empowered to make better healthcare decisions; and help advance medical research and understanding. The HealthUnlocked platform is used as a clinical care planning tool in 75 hospitals in the UK.
Find the NKF announcement at https://www.kidney.org/news/new-collaboration-between-nkf-and-healthunlocked-to-provide-free-online-support-community .
UCSD Kidney/Pancreas Transplant will present Transplant 101: Patient and Family Information Meetings, which are required for all new patients before starting transplant evaluation. The Meetings, which cover the waitlist, financing, medications, and post-transplant life, are held at the UCSD campus in La Jolla. Valet parking is complementary.
- Meetings in English will be held May 5, 18, and 23; June 2 and 15; July 7 and 20, and August 4 and 17. For complete details in English, see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/Transplant101En.05.08.17.pdf .
- Meetings in Spanish will be held May 11, June 14, July 13, and August 9. For complete details in Spanish, see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/Transplant101Sp.05.08.17.pdf .
The Coalition for Supportive Care of Kidney Patients (http://kidneysupportivecare.org/Home.aspx) has created a booklet called Planning Today for Tomorrow’s Healthcare: A Guide for People with Chronic Kidney Disease. You can find a copy at http://kidneysupportivecare.org/Files/ACPforCKDbrochure3-2017.aspx .