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New study aims to help patients gain a better understanding of end-stage renal disease

Megan Urbanski, a doctoral student pursuing her PhD in Social and Behavioral Sciences at the college, received the Ruth L. Kirschstein National Research Service Award, a two-year pre-doctoral fellowship from the National Institute of Diabetes and Digestive and Kidney Diseases to study the treatment decision-making preferences of people diagnosed with kidney failure, or end-stage renal disease (ESRD). Heather Gardiner, associate professor of social and behavioral sciences, is sponsoring the project, with Dean Laura A. Siminoff as co-sponsor.

Urbanski is collaborating with Temple University Hospital to recruit participants and conduct the study. They plan to compare the experiences of those who receive an unexpected diagnosis of ESRD with those who have planned renal replacement initiation—that is, those who were aware of their kidney disease before they were diagnosed with ESRD and thus given a sufficient amount of time to learn more about the condition and prepare for treatment.

As it is, approximately 36% of people who reach ESRD were likely unaware that they had kidney disease at all. The condition is often asymptomatic until end-stage, at which point people are typically faced with shortness of breath, fluid retention, nausea, confusion, and other symptoms.

Patients then face a whirlwind of conversations, treatment plans, and options. They are often instantly initiated dialysis and may be given information about kidney transplantation; they may be told about home dialysis; and they may or may not be given the opportunity to ask all of the questions that they undoubtedly have. Communication about treatment can be inconsistent depending on the doctor, patient, and situation, and part of the problem is that we don’t know how or when patients are given this information—and, most importantly, we don’t know how well they receive and comprehend it.

Urbanski and her team of researchers will conduct 12 to 14 months of participant recruitment, interviews, and analysis; they plan to talk to approximately 25 patients who received unexpected diagnoses of ESRD, as well 25 patients with planned renal replacement therapy, who typically face better outcomes. In addition, they’ll interview each patient’s nephrologist to compare the doctor’s interpretation of the events—how they communicated options and information on the disease—with that of the patient. The patients are from Temple University Hospital, which treats a large number of minorities, who Urbanski says are disproportionately affected by ESRD.

“The end-stage renal disease population is very vulnerable, and this subset of the ESRD population is particularly vulnerable with higher mortality rates and limited access to kidney transplantation,” said Urbanski. “We’re looking to see if there’s a way to improve those health outcomes, thereby helping to reduce some of the disparities that currently exist among this group.”

Read more research from the Department of Social and Behavioral Sciences.

Posted:  August 28, 2018