Making the Dialysis Experience Person-Centered: The Celeste Castillo Lee Memorial Lecture at ASN Kidney Week 2019

  • 1 Zach Cahill is Marketing and Communications Specialist with the Kidney Health Initiative.
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ASN Kidney Week is unique among medical society gatherings for elevating the patient voice during the annual meeting. Accelerating innovation and discovery in the kidney disease space makes including the perspectives of people with kidney disease in scientific meetings and other forums essential. During the ASN Kidney Week Annual Meeting, more than 10 people with kidney disease gave talks on a variety of topics.

The foremost of the patient presentations was the Celeste Castillo Lee Memorial Lectureship, a rare example of a lecture endowed in the name of a patient and presented during a medical society meeting. Established in 2017, the lecture continues the legacy of Celeste Castillo Lee, who championed people with kidney disease for 30 years. She served in many leadership roles throughout the community, including on the Kidney Health Initiative (KHI) Board of Directors and as the founding chair of the KHI Patient and Family Partnership Council, bringing her experience with peritoneal dialysis, hemodialysis, and transplantation to drug and device development. Her life inspired and motivated a generation of people with kidney disease and kidney health professionals.

Derek Forfang, a 10-year veteran of advocacy on behalf of people with kidney diseases, delivered this year’s lecture, which focused on the topic, “How can patients be treated as individuals?” For 20 years, Mr. Forfang has had kidney failure. He experienced in-center hemodialysis before receiving a kidney transplant. His experience in and with people on dialysis provided firsthand knowledge into the culture of dialysis clinics and how the current system is not designed to be people centered.

A need for patient-centered measures?

The emphasis on current healthcare measurement in clinics demonstrates how the system is not people centered such that measurement approaches often do not align with patient and family preferences and values. He said people with kidney disease are not involved in meaningful ways in developing the measures, resulting in the feeling that they are subjects of measures rather than decision-makers or drivers of care. For example, the Centers for Medicare & Medicaid Services (CMS) End-stage Renal Disease Quality Incentive Program, used to evaluate and pay kidney health professionals, is primarily driven by measures that are clinical in nature, rather than metrics that are important to patients. This system results in people feeling disengaged and that they are just being moved in and out of treatment.

Mr. Forfang posited that even the Advancing American Kidney Health initiative could benefit from additional focus on patient preferences where transplantation and home dialysis utilization are concerned.

A person-centered experience helps people with kidney disease navigate their dual lives, respects them as individuals, and acknowledges how their identity evolves over time. Mr. Forfang applied this philosophy to clinical measures and emphasized that it is possible to align such measures so they are meaningful to people with kidney disease.

True patient-centered measurement is driven by a patient’s expressed preferences, needs, and values and informs progress toward better health, better care, and lower costs. CMS is already evolving to provide better measures. The agency’s Meaningful Measures Initiative proposed measures that empower patients and emphasize the person as a partner in care. The National Quality Forum is investing in patient-centered planning and coordination. Mr. Forfang served on a CMS Technical Expert Panel that evaluated patient-reported outcomes (PROs) for kidney failure. The group was expected to recommend quality of life or recovery time after dialysis as PROs, but because of meaningful input from the patients on the panel their actual PRO recommendation was life goal–directed care. That recommendation pivots CMS’s priorities toward the values and priorities of people with kidney disease.

Mr. Forfang attributed these institutional evolutions to a growing knowledge of a person’s experience with kidney disease. Kidney disease, he explained, is a journey, and priorities and values change over time. The identified needs and priorities of people with kidney disease should drive care. Payers are realizing that care plans should be built around what matters most to people as individuals.

Care plans are a tool dialysis providers may use to provide more individualized care. Typically care plans are discussed once a year, are problem-centered, and are focused on umbrella clinical outcomes. They often do not feel meaningful and are not individualized.

Aligning dialysis care with patient goals

In contrast to a problem-centered plan, Mr. Forfang proposed a person-centered dialysis care plan that aligns dialysis care and the goals of people with kidney disease. Patients and care teams jointly develop an individualized plan that includes patient-identified needs and priorities. A person-centered care plan is a feasible approach that can work in the current care and regulatory context.

Kidney care professionals may start forming a person-centered care plan by asking open-ended questions about what a patient’s life is like outside the clinic and what their life goals are. This approach requires advance preparation. The patient should be provided educational materials and invited to attend a meeting off the dialysis floor. Second, the care team should hold a care planning meeting that addresses the following:

  • Identifies patient needs, priorities, and barriers.

  • Discusses options to align dialysis care with needs, priorities, and barriers.

  • Works with the patient to make decisions and develop an individualized care plan.

Last, a person-centered care plan will include timely follow-up and regular check-ins. Mr. Forfang helped develop My Dialysis Plan with the University of North Carolina Kidney Center to expand on the ideas of the person-centered care plan and provide kidney health professionals and people with kidney disease the tools they need for more individualized care.