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.
In Blurred Lines: Keeping Safe Boundaries at a Dialysis Clinic, Lori and Network 18 Patient Services Director Eileen Rhodes discuss the problems that can arise when patients and staff become friends. Find this recorded podcast at https://www.rsnhope.org/kidneytalk/blurred-lines-keeping-safe-boundaries-at-a-dialysis-clinic/.
Previous podcasts can be found at https://www.rsnhope.org/, along with information about the Renal Support Network’s Annual Teen Prom, Annual Essay Contest, Monthly Support Group Meetings, Public Speaking Training, KidneyTalk Magazine, HOPEline Peer Support Hotline, KidneyTalk Blog, Renal Recipes, and the many other services RSN provides for ESRD patients.
NKF and Swedish Medical Center will present an April 25, 2020 four-hour workshop on Lifestyle & Kidney Health: Diet, Exercise, Weight Loss and Beyond. Topics will include nutrition, diabetes, blood pressure, fitness, and transplant preparation. Lunch will be provided. See below for full details:
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 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.
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.
The Forum of ESRD Networks has added a recording and slides from their October 4, 2018 live webinar on Depression & Dialysis: Removing the Stigma and Strengthening our Mental Health. The event was hosted by patient leaders from the the Forum in collaboration with AAKP and NKF. Find these resources, plus ancillary tools, at http://esrdnetworks.org/education/quality-conference/quality-conference-webinar-series-2018-2019.
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 Coalition for Supportive Care of Kidney Patients will present a 15 November 2018 webinar on Mapping the Future: Implementation Strategies for Kidney Supportive Care. This is the first in a series of webinars that parallels a series of Nephrology News & Issues articles on “supportive care” for kidney patients that will begin in the November 2018 issue. Direct any questions you have to Kelly Brooks at firstname.lastname@example.org or 804-320-0004 x2706
Register for the webinar at https://qualitynet.webex.com/mw3300/mywebex/default.do?nomenu=true&siteurl=qualitynet&service=6&rnd=0.9781770900950815&main_url=https%3A%2F%2Fqualitynet.webex.com%2Fec3300%2Feventcenter%2Fevent%2FeventAction.do%3FtheAction%3Ddetail%26%26%26EMK%3D4832534b00000004cb0a9a58476d6bd293b5a9f17210c9e047618e1f532c1a7922440c6f4b391fed%26siteurl%3Dqualitynet%26confViewID%3D107244241343796963%26encryptTicket%3DSDJTSwAAAATkodchRe-HYk3NR3hmhP3ljworAPoym4g8yOkYBUMOqg2%26.
Current plans include future webinars in the series on Providing Supportive Care: Tools & Resources for the Journey in December and Best Case/Worst Case and Older Patients in January. Once they are scheduled, you can register for these webinars at https://qualitynet.webex.com/mw3300/mywebex/default.do?siteurl=qualitynet&service=6.
The Coalition for Supportive Care is an evolution of the earlier Kidney End-of-Life Coalition. Their mission is to “Promote effective interchange among patients, families, healthcare professionals, and payers to ensure the provision of patient-centered supportive care for patients with kidney disease. Supportive care is the continuum of palliative care and includes providing patients with relief from the symptoms, pain, and stress of a serious illness. The goal of the Coalition is to improve the quality of life for both patients and families from the time of diagnosis through to end-of-life care.” Find out more about the Coalition for Supportive Care at https://kidneysupportivecare.org/Home.aspx.
The Road Back to Life is a nonprofit organization that provides mentoring to dialysis patients, patient support groups, and award-winning CKD classes. They offer patient support groups in Lynnwood WA on October 23, November 27, and December 25, 2018, and in both Monroe and Mountlake Terrace WA on November 13 and December 11. They also provide November 8, December 6, and December 13, 2018 courses on HOPE (or Healthy Options) in Mountlake Terrace, and a six-part course November 7-December 19 on Survive and Thrive with CKD in Lynnwood WA. For details see https://www.kidneysupportgroup.com/calendar/. For more information on The Road Back to Life see https://www.kidneysupportgroup.com/.