For patients navigating kidney disease, the care journey is defined by a series of evolving conversations with clinical teams and loved ones. These discussions often center on deeply personal questions: Which treatment best aligns with my lifestyle? What does a high quality of life look like for me today? As I grow older, what do I want my care to look like?
At the Coalition for Supportive Care of Kidney Patients, housed at The George Washington University, a multidisciplinary team is dedicated to empowering both clinicians and patients to have meaningful, co-equal conversations about kidney disease and its care pathways.
“Chronic kidney disease is a condition that patients can experience for decades, and their needs change as they navigate different phases of their life,” says Dr. Christine Corbett, Executive Director of the Coalition and Research Professor at The George Washington University’s School of Nursing. “It’s essential to equip patients, their caregivers, and clinical teams with the tools and knowledge to have comprehensive, unbiased, and empathetic conversations.”
The Coalition champions a concept called kidney supportive care (KSC), which emphasizes the need to adapt care for different life stages while maintaining consistent, holistic support for patients with kidney disease. KSC draws on decades of learnings in the palliative care space, which has a strong focus on sustaining high patient quality of life and managing patient symptoms comprehensively. While often associated with end-of-life, palliative care’s core aspects have relevance to all life stages, particularly when it comes to a condition as multi-faceted as kidney disease.
“The idea is to meet the patient where they are with complete information and compassionate care. Whether the patient is a musician and kidney transplant recipient who wants to tour with their band, or a great-grandmother with end-stage renal disease who is excited to host a family dinner, kidney supportive care has a critical role to play,” says Matthew Ryan, Program Lead for the Coalition.
The tools of KSC may be familiar to clinicians already – shared decision-making, prognostication, symptom management, and spiritual and psychosocial support. The trick is implementing the full suite of tools effectively in a nephrology setting, and that is where the Coalition truly shines.
Founded nearly three decades ago, the Coalition has grown into an international research, education, and advocacy hub for KSC. Research like the ExPAND Project, co-led by GW faculty member and Coalition Executive Committee member Dr. Dale Lupu, is collaborating with clinics across the United States to develop clinical workflows and support systems for patients who choose not to start dialysis. Educational programs like the Kidney Supportive Care Skills Series coach clinicians on how to discuss treatment options with patients in a culturally sensitive manner. And advocacy efforts like the Coalition’s contributions to a joint publication of the National Kidney Foundations and the Center to Advance Palliative Care aim to further integrate KSC into nephrology.
Like KSC, the Coalition prioritizes patients and their care partners at the center of it all. An ever-growing library of free, public-facing resources developed with patient advisors has been viewed by a global audience. And a growing media outlet showcases inspiring patient stories.
“Our mission is for kidney supportive care to become standard practice in nephrology, globally,” says Dr. Corbett. “While there is still much to do, we are inspired every day by the patients and clinicians who tell us how our work has empowered them to seek and deliver improved, holistic, care. That is what it’s all about.”
To learn more about the Coalition for Supportive Care of Kidney Patients, visit kidneysupportivecare.org.
See the latest annual report from the Coalition here.