Kidney Health Initiative (KHI)

KHI Current Project

Prioritizing Symptoms of ESRD Patients for Developing Therapeutic Interventions

Patient Care Issue:

Although patients are the final consumer, they rarely have an opportunity to influence products that come to market. Patients with end-stage kidney disease (ESKD) undergoing maintenance dialysis report a wide range of persistent or recurrent symptoms.1 Surveys of patients undergoing maintenance dialysis indicate that they have, on an average, 11 symptoms, with the most common being feeling tired, difficulty falling or staying asleep, itching, muscle cramps, pain, and sexual dysfunction.1


Not surprisingly, there is a significant association between symptom burden and impairment in quality of life. It is, thus, reasonable to suggest that improvement in some of these symptoms may lead to a meaningful improvement in patient-reported outcomes and/or quality of life. Despite the high burden of symptoms in patients undergoing maintenance dialysis, there is no drug or device that has been approved by the FDA that results in improvement in any patient-reported outcomes.

KHI Solution:

KHI has formed a workgroup that will confirm and prioritize the symptoms experienced by ESKD patients with additional input from clinicians, researchers, dialysis providers, and industry. The workgroup will then facilitate the engagement of manufacturers and patent-holders with drugs or devices not previously tested in the nephrology space to determine their application and indication for patients with ESKD.

Prioritizing Symptoms of ESRD Patients


The KHI workgroup has recently been confirmed and started regular meetings by phone.



The workgroup's article for Phase 1 was published in the Clinical Journal of the American Society of Nephrology (CJASN) in March 2018. The workgroup's second article for Phase 2 was e-published in CJASN in September 2018.

Timeframe for Completion


Steering Committee:

Jennifer E. Flythe, MD, MPH, FASN
University of North Carolina Kidney Center

Rajnish Mehrotra, MD, FASN
University of Washington


Emaad Abdel-Rahaman, MD, PhD, FASN
University of Virginia

Amy Barton Pai, PharmD, BCPS, FASN, FCCP, FNKF
University of Michigan

Manisha Jhamb, MD, MPH
University of Pittsburgh

Matthew B. Rivara, MD
Kidney Research Institute at the University of Washington

Bijin Thajudeen, MD, FASN
University of Arizona

Steven D. Weisbord, MD, FASN
University of Pittsburgh

Caroline Wilkie
KHI Patient and Family Partnership Council

KHI Board of Directors Liaison

Wendy L. St. Peter, PharmD, FASN
American College of Clinical Pharmacy - Nephrology Practice and Research Network

Conflict of Interest:

To view KHI's Conflict of Interest and Disclosure Policy, please click here.

To view the Workgroup's Disclosures, please click here.

If you have any questions, please do not hesitate to contact KHI at

Selected References:
  1. Abdel-Kader K, Unruh ML, Weisbord SD. Symptom burden, depression, and quality of life in chronic and end-stage kidney disease. Clinical journal of the American Society of Nephrology : CJASN 2009;4:1057-64.