A patient we’ll call Bonnie has been on dialysis for five years, making the difficult trip three times a week to a clinic to sit for hours hooked up to a machine that filters toxins from her blood. Bonnie is 65 and suffers from end-stage renal disease (ESRD), the gradual failure of her kidneys. She has chronically low blood pressure, which complicates the dialysis, and ingests a lot of salt which causes weight gain between treatments. Often, she wakes up breathless and ends up in the emergency department. The ED and dialysis unit don’t have a shared electronic health record, and on discharge there is little communication between the two sites about her care. Nor is there communication between the dialysis unit and her primary care doctor (PCP). When she’s hospitalized, her medications are sometimes changed, but that critical information often doesn’t get back to her many providers. Bonnie is hoping for a kidney transplant, but she doesn’t know where to start, and she has yet to undergo an evaluation to see if she’s eligible.

This type of siloed, uncoordinated ESRD care has serious consequences for Bonnie and thousands of patients like her. On a national level, ESRD takes a huge toll on patients, families and caregivers, and society. Transplants are exceedingly scarce, and so for the vast majority of the 750,000 people affected by ESRD in the US each year, dialysis is the only viable treatment. For patients on dialysis, hospitalization rates and risk of developing related medical problems, and of dying, are high. Finally, while ESRD patients make up less than 1% of the Medicare population, they account for more than 7% of the Medicare budget – a staggering $50 billion annually.

Fragmented care is an important part of the reason for the high costs and utilization and often poor outcomes associated with ESRD. Patients receive care through a patchwork of providers at various sites — outpatient dialysis units, primary care practices, specialty clinics, hospitals and others – which often don’t communicate. Gaps in care are inevitable, and opportunities to intervene before problems arise are often missed.

That’s why in 2016 we launched a coordinated ESRD program within Partners Healthcare, based at Brigham and Women’s Hospital (BWH) in Boston, one of the first to bring the care-coordination principles that are increasingly common in primary care to disease-specific specialty care. While other programs, like the CMS ESRD demonstration projects, have piloted care-coordination models with large dialysis organizations, ours is the only such program that we’re aware of that coordinates care across all stakeholders (dialysis units, hospitals, primary care providers, and others) rather than focusing on care within the dialysis unit itself. Further, unlike other programs, ours extends beyond dialysis-based care to facilitate transplant evaluations and, when needed, palliative care.

At the start of the program, a nurse care coordinator (co-author Diane Goodwin) connected with Brigham and Women’s ESRD patients weekly at four dialysis units, identifying those at risk for deterioration and increased utilization (ED visits and hospitalizations) and implementing strategies to reduce utilization and improve clinical outcomes. These included face-to-face visits to provide self-care education and guidance on avoiding the ED, medication reviews, dialysis-treatment monitoring, tracking immunizations, assuring reliable vascular access, and working with the dialysis unit, visiting nurses, PCPs, specialists and others to coordinate care and assure that all involved had the same information about the patient’s history and status. (Today we have three nurses in this care-coordination role.)

For patients who are admitted to the hospital, a nurse within the program conducts a post-discharge assessment which includes documenting all medications the patient is on, and the dosage, frequency and route, and communicating this and other key information to the patient’s PCPs, the dialysis unit, and others. When patients do go to the ED, a nurse likewise reaches out to the ED team to share information, help guide care and ensure appropriate follow up. Finally, program nurses communicate directly with transplant coordinators to facilitate evaluations and assure that eligible patients are placed on transplant wait lists.

To date, the program has engaged with a total of 100 patients and is currently coordinating care for 54. The results three years out are encouraging. Among these high-risk patients (those who among other indicators have missed treatments, required transfusions, or habitually used the ED for non-urgent issues) we’ve seen on average 5 fewer ED visits or hospital admissions per patient per year than would have been typical before our intervention. Close to one-fifth of the patients in the program have been referred to palliative care, and several who otherwise wouldn’t have received transplants have had them as a result of the program’s enrollment efforts.

By reducing healthcare utilization and facilitating transplantation we’ve thus far saved twice the amount that it costs to run the program. In one slice of the data, we calculated $428,000 in savings from 74 avoided ED visits and 34 avoided admissions, and over $1 million in savings attributable to facilitated transplantations. Feedback from patients and providers has been overwhelmingly positive. In an email, one nephrologist praised the program as a “GREAT addition to ESRD patient care,” citing “improved communication, improved integration of care between providers, [and] avoiding admissions.”

Going forward, we’ll be evaluating the impact of the program on costs and utilization relative to those of a matched control group, and are expanding this work to other Partners hospitals and outpatient dialysis units. Ultimately, as we establish the positive impact of the program and the ability to translate it to other settings within Partners, we hope to disseminate it to other institutions. The goal is a future where silos are broken down in ESRD care delivery and patients, providers, and society share in the benefits.

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