Patients with advanced chronic kidney disease (CKD) and their families fear dialysis, and the selection of a renal replacement therapy (RRT) is not easy. It is uncertain how much patients with CKD must understand about their disease process and treatment options before they can make an informed decision. Are there psychosocial elements that influence the decision of which RRT modality is “right”? Are we providing the necessary information so patients can make their decision appropriately?

Risks, benefits, and cost are some of the most important factors affecting the selection of a treatment modality. Healthcare insurance coverage and finances also play a key role.  Hemodialysis (HD) can cost up to $89,000 per year, while peritoneal dialysis (PD) costs around $53,000. Kidney transplantation costs about $32,000 for surgery and $25,000 per year post surgery. Treatment selection often depends on the patient’s understanding of the various dialysis options as well as kidney transplantation, combined with the patient’s desire, financial situation, motivation, distance from a HD unit, and physician and/or nurse bias. Perceptions also play an important role when it comes to choosing an RRT.

In a recent AJKD article on the EPOCH-RRT (Empowering Patients on Choices for Renal Replacement Therapy) Study, Dahlerus et al report on the factors that influence patients when choosing a dialysis therapy. This cross-sectional study was conducted to assist the development of educational aides for patients faced with choosing a dialysis modality. (Of note, it does not include kidney transplantation as a treatment option.) Along with trained nephrologists and social workers, Dahlerus and colleagues included patients and family members who developed the interview protocol and analyzed the data. The study recruited 180 patients from across the United States using social media and personal contacts. Compared with US Renal Data System data, this study enrolled younger patients, with more women and African Americans represented. The majority of patients were either retired or unemployed.

Figure 1 from Dahlerus et al AJKD, © National Kidney Foundation.

The study found that the choice of dialysis modality was most influenced by independence, quality and quantity of life, and flexibility of the patient’s schedule. Other factors differed across subgroups and were based on characteristics such as age, sex, and marital status of the patient. In addition, several subthemes were identified in this study. For example, patients treated with HD were more preoccupied by quantity rather than quality of life. Meanwhile, patients treated with PD responded that quality of life was more important and that their therapy of choice allowed for a more normal lifestyle. Patients receiving HD cited fear of infection as a reason for not choosing PD instead.

While this study reported several key findings related to the factors influencing the selection of dialysis modality in patients with end-stage renal disease, one of its discoveries was particularly alarming: the number of patients (one-third) who thought that the choice of RRT was largely made for them and not by them. This was overwhelmingly true for patients receiving HD (~46%) compared to those receiving PD (~2%). It would be interesting to survey the providers of patients enrolled in this study, as their general perception could be that enough information was shared with patients for them to make well-informed decisions about future treatment. Regardless of whether this is a perception or reality, the outcome is the same. Although more education may be needed, physicians still need to improve communication with patients and ensure that they are equipped with the necessary information to make their own health care choices. As a nephrology community, we need to do more to empower, educate, and engage our patients with their complex health care needs, especially when it to comes to the choice of dialysis therapy. The findings of the EPOCH-RRT Study identify patient values that should be incorporated in the process of empowering patients. In the end, it is not about whether we tell our patient that his preferences are incorporated into the treatment options presented to him, but whether he feels that this is so and that the choice is ultimately his own.

Post written by guest contributor Kashif S. Shaikh, MD, and Abdo Asmar, MD, AJKD Blog Advisory Board Member
University of Central Florida, College of Medicine

To view the article abstract or full-text (subscription required), please visit AJKD.org.