Stay up to date with the latest news, events and happenings at the Coalition
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Good news! The recommendations in a recent online article in the Annals of Internal Medicine call for interventions like the two in ExPAND* |
"The importance of a comprehensive and balanced approach to kidney disease education for patients who are not transplant-eligible"
the offering of "dedicated treatment pathways for patients who do not wish to undergo dialysis."
In "Effect of Starting Dialysis Versus Continuing Medical Management on Survival and Home Time in Older Adults With Kidney Failure--A Target Trial Emulation Study" published this week (attached plus the accompanying editorial), the authors found estimated that among older adults who were not referred for transplant, those starting dialysis when their eGFR fell below 12 mL/min/1.73 m2 who were not referred for transplant had modest gains in life expectancy compared to those who chose active medical management without dialysis and less time at home.
The authors concluded, "Decisions to start dialysis at this level of kidney function should consider the clinical factors that affect this tradeoff and whether the expected outcomes of starting dialysis align with an individual’s values and goals."
We appreciate our ExPAND partners. With you, we are hoping to advance the care of older patients with kidney disease!
Woody Moss, MD, Dale Lupu, PhD, and The ExPAND team
*ExPAND is the PCORI funded: Expanding and Promoting Alternative Care and Knowledge in Decision-Making. Expanding choice for people with kidney disease.
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ExPAND Cultural Tailoring of KDE Materials |
Our ExPAND team embraces the cultural sensitivity of not only our new materials, but also the delivery of the materials. The team invited several patient advocates/advisors from across the country to review materials (power point, patient decision aid, and new active medical care video).
Here was the ask:
We have developed a Kidney Disease Education program that focuses on expanding treatment options for people who may not benefit from dialysis. We wanted to hear from our patient advisors about how the team can make it more culturally sensitive, paying particular attention to:
- words
-images
-culture/values
-family
-spiritual and religious beliefs
Participants were asked to review the newly developed KDE Material prior to the focus group. Participants were then asked to attend one of 3 focus groups via zoom. The engagement was phenomenal. Each participant provided thoughtful, mindful suggestions to enhance our current materials and the delivery of the materials.
Next steps: The ExPAND team will review the suggestions and revise content accordingly prior to dissemination to the ExPAND site participants.
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A message from the Executive Director, Dr. Christine Corbett |
The Coalition and the ExPAND project faculty are infusing trauma-informed care principles and practices throughout curriculum, educational offerings, and communication skills, to enhance the holistic patient-centered approach to care. As a trauma certified practitioner, I am aware of the importance of recognizing trauma response and also helping patients and staff complete the stress response cycle, enhancing self-care practices, including mindfulness practice, journaling, deep breathing, and meditation. Let's define trauma informed care:
What is Trauma Informed Care?
It is important to differentiate that in this context, trauma is not the event that happened
to you. It is what happened or is happening inside you.
Trauma is an injury lodged in our nervous system, mind and body lasting long past the
originating incident and may be reactivated at any moment.
Trauma refers to intense and overwhelming experiences that involve serious loss,
threat, or harm to a person's physical or emotional well-being.
Trauma-informed care seeks to:
Realize the widespread impact of trauma and understand paths for recovery;
Recognize the signs and symptoms of trauma in patients, families, and staff;
Integrate knowledge about trauma into policies, procedures, and practices; and
Actively avoid re-traumatization.
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Meet David Rush, ExPAND Patient Advisory Co-Chair and Patient Co-Investigator
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David Rush is a platinum selling recording artist formerly signed to Pitbull's label, Mr.305 inc. As a former in-center and now current home Hemo dialysis patient . The one time transplant recipient truly knows what it means to live life with a Chronic Kidney disease. This point was truly proven while as a patient David took his home Hemo dialysis machine on a 40 city world tour in 2009 with multi platinum artist Pitbull as an opening act.
David is now a motivational speaker, Patient/Doctor consultant, spokesperson and kidney advocate. And also a host of the WinsOnly Lifestyle Podcast . That gives an inside look from the patient perspective on his journey dealing with CKD.
David has been serving on the Executive Committee of the Northwestern Kidney Core Center Nu-GoKIDNEY for the past 7 years and also consulting for different major companies such as AstraZeneca, Outset Medical & U.S.R.C to name a few.
And as recent as April 2024, David rush has become a corporate KCO educator @USRC! David also serves on the board for kidney x and on the board of The Kidney Health Initiative (KHI) who’s mission statement is to catalyze innovation and the development of safe and effective patient-centered therapies for people living with kidney diseases.
David was recently was awarded the ASN President’s Medal in November 2022 for his advocacy work in kidney health forwarding the advancements in patient voice and modality choices. Now a husband and father of 2 and self proclaimed “HOPE DEALER”, has dedicates his life to putting positive energy into the world and hoping his story will help others thru their struggles. Adapting the mantra “Wins Only” David feels this is a lifestyle he wants the world to adapt. Seeing that no matter the circumstance you are still a winner!
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Thank you to Shari Sliwa! |
The Coalition would like to acknowledge and recognize the nearly 14 years of service from Program Manager, Shari Sliwa, MA! Shari's dedication to projects, programs, and staff was exceptional and she will be missed. She was gracious to stay on board until Matthew Ryan, MSPH, MBA, was transitioned into the Manager, Research Programs position. We wish you the very best, Shari!
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American Society of Nephrology Kidney Week 2024 |
Thursday, October 24-27, 2024.
San Diego, CA
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All sessions, posters, and exhibits will take place in-person in San Diego. All meeting content will be available in the ASN eLearning Center in late
November. There is no virtual or hybrid event in 2024.
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ANNA Nephrology Nursing Summit |
September 16-18, 2024
Atlanta, GA
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Enhance your nursing practice and hone your leadership skills at the 2024 Nephrology Nursing Summit. This dynamic educational program addresses current issues and trends in nephrology nursing practice, management, and leadership. Networking sessions dates/times will be coming soon. We'd love to meet with you in person in San Diego!
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Montez-Rath, M. et al., (2024). Effect of Starting Dialysis Versus Continuing Medical Management on Survival and Home Time in Older Adults With Kidney Failure: A Target Trial Emulation Study. https://doi.org/10.7326/M23-3028
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| Share Your News in the Coalition Update
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Do you have news or events that you would like to share? Please email christine.corbett@gwu.edu for inclusion in the next Coalition Update!
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The Coalition for Supportive Care of Kidney Patients (CSCKP) aims to create a culture change that transforms kidney disease care, putting the patient at the center of care, through the integration of palliative approaches and practices. If you would like to donate to the Coalition to support our Kidney Supportive Care efforts, please see below:
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Join The Coalition Mailing List |
Join the Coalition's over 700 members in transforming the culture of kidney care around the globe. Sign-up for Coalition Updates and share with anyone who might have an interest in our work.
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Follow the Coalition for Supportive Care of Kidney Patients
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