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TRANSFORM CARE - Coalition for Supportive Care of Kidney Patients
Planning Today for Tomorrow's Healthcare - top header

Transform Care

Why transform kidney supportive care?

Pioneering best practices in high quality supportive care for people with kidney disease

Transform Kidney Care Diagram

Over one-half million Medicare patients are on dialysis today.

The Coalition is leading the change in the culture of caring for people with kidney disease.
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Most kidney patients are elderly, with a median age of 64.6 at diagnosis; there are a half million Medicare patients on dialysis today. These patients may achieve some extension in their life expectancy and be able to meet personal goals. Many, however, experience a high level of unrelieved symptoms that are comparable to or greater than cancer patients. These symptoms can include chronic pain, fatigue, nausea and vomiting, a decline in mental processing and function, spiritual anxiety, depression, and a heavy burden on caregivers. Symptoms are often unrecognized and untreated. Added to the suffering, dialysis can create a financial and emotional drain on patients, their families, and the entire healthcare system; 1.3 percent of the Medicare population consumes nearly 8 percent of the Medicare budget to cover their dialysis care.

Older patients on long-term dialysis use more intensive procedures, hospitalizations, and ICU admissions in the final month of life; they are twice as likely to die in hospitals. Those with end-stage renal disease (ESRD) or advanced chronic kidney disease (CKD) have an adjusted mortality rate of 6.4–7.8 higher than the general population. Their use of hospice care is less than half the national norm.

photo of female of doctor consoling older female patient

We encourage important family discussions and help facilitate Advance Care Planning.

The current Medicare End-Stage Renal Disease (ESRD) program is not positioned to make a true difference for patients or caregivers. Advance care planning—vital to quality care—and discussions that enable patient-centered, palliative interventions take up additional time for clinicians, and ESRD patients and their families seldom experience them. Nephrologists are not prepared, by training, to effectively deal with these complex issues.

That’s why CSCKP proposes real change in education, clinical care, research, quality & policy.

photo of kidney surrounding by circle of hands
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