Identify outcomes most important to kidney disease patients with different characteristics

When diagnosed with kidney failure, patients face difficult decisions about their care. In order to identify the factors that are most important to patients, we conducted qualitative interviews of patients with kidney disease. Patients on hemodialysis, patients on peritoneal dialysis, and those who had not yet received any dialysis treatment were all interviewed during this phase of the study.  Questions used in these interviews were developed with input from our stakeholder advisory panel.

Summary of Findings

To better understand how patients with chronic kidney disease (CKD) perceive selecting in-center hemodialysis (HD) or peritoneal dialysis (PD), researchers working on the EPOCH-RRT study interviewed 180 patients with kidney disease. There are other types of treatment options like kidney transplant, home hemodialysis, or conservative management. However, since the majority of CKD patients in the United States are offered HD or PD treatment when their kidney function gets too low, this study focused on those two dialysis types.

During the interview, participants were asked whether factors such as independence and quality of life were important to them. Researchers analyzed the responses in order to identify the most relevant concerns about the decision to start HD or PD. Awareness of these patient preferences can help doctors and health care providers address individual patient priorities to allow for shared decision-making.

The information gathered from interviews with patients highlighted the need for greater patient involvement in choosing the right type of dialysis. As a result, the EPOCH-RRT study team is developing an online decision tool to help CKD patients better understand these two dialysis types and help them make more informed decisions.

Compare the impact of in-center HD and PD on patient-centered outcomes

There are large differences in the way in-center hemodialysis (HD) and peritoneal dialysis (PD) are performed and the impact they have on daily life. Understanding this, we wanted to find out whether HD and PD also have different effects on factors that patients had identified as important.  
We developed a survey to assess how dialysis affected factors identified as important to patients in Aim 1.  The survey was deployed at dialysis facilities in the United States participating in two large studies of in-center HD and PD practices (the Dialysis Outcomes and Practice Patterns Study Program,
Between February and August 2015, 1350 in-center HD patients and 613 PD patients completed the survey and provided answers on a scale of “not at all” to “extremely” in response to the question “” each of the factors in the figure. Patients also had the option of indicating if a factor was not applicable to them and these patients were not counted in the analysis for that factor.
Compared with before starting dialysis, how does dialysis affect
Patients felt that dialysis had a big impact on their life, with some differences between HD and PD patients.
  • In-center HD patients were more affected for 15 of 16 factors. In particular, they noted that HD had an impact on free time, doing activities of interest, drinking water, eating, and feeling healthy.
  • Although our findings may be partly due to differences between characteristics of in-center HD and PD patients, appropriate education may improve patients’ understanding and expectations before and after deciding upon a dialysis modality.

Test the effect of the decision tool on patients’ decision-making process

We tested the effectiveness of the ChoosingDialysis decision tool to support decision-making among patients with advanced CKD (estimated GFR <25 mL/min/1.73 m2) in a randomized study of 140 English-speaking adults. After using the decision tool, participants were more certain about their dialysis choice, as reflected by a lower decisional conflict score. They also had greater knowledge about dialysis options, compared with those who did not use the tool.

Publications and Press

Subramanian L, Quinn M, Zhao J, LaChance L, Zee J, Tentori F. Coping with Kidney Disease - Qualitative Findings from the Empowering Patients on Choices for Renal Replacement Therapy (EPOCH-RRT) Study. BMC Nephrol. 2017;18(1):119. doi: 10.1186/s12882-017-0542-5. Full text available.

Dahlerus C, Quinn M, Messersmith E, Lachance L, Subramanian L, Perry E, Cole J, Zhao J, Lee C, McCall M, Paulson L, Tentori F. Patient Perspectives on the Choice of Dialysis Modality: Results From the Empowering Patients on Choices for Renal Replacement Therapy (EPOCH-RRT) Study. Am J Kidney Dis. 2016;68(6):901-910. doi: 10.1053/j.ajkd.2016.05.010. PubMed

Research has been presented at the following scientific conferences:
  • AcademyHealth Annual Research Meeting
  • National Kidney Foundation Spring Clinical Meetings
  • American Society of Nephrology Kidney Week
  • EDTNA/ERCA Congress
  • Joint Statistical Meetings

Research described on this web site was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (1109). The statements and views presented here are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.