The gulf between what we as providers value for our patients and what the patients value is recognized. It has been a topic of discussion at multiple seminar, meetings, and journal articles. Surveys show patients rate sleep disorders, itch, dry skin, and fatigue as top concerns. The same surveys also show that providers are often unaware that these are patient issues, and if they are, they do not recognize the importance to the patients. How can we discover what is important to our patients?
The easy answer is to sit down and talk. However, like many easy answers, it is difficult to achieve. In the dialysis unit, our focus is on metrics that can be measured: mineral bone disease, anemia, Kt/v, BP. In the exam room, the focus is on vital signs, medication adjustment, and reconciliation. Few providers have the luxury of being able to sit down and really talk.
Kidney360 brought together four hemodialysis patients to talk about central venous catheters versus permanent accesses. The conversation took a surprising turn when the participants began discussing their own issues.
When we discuss catheters, we focus on infection and adequacy. It should be noted that only one patient brought this up, and he had worked many years as a dialysis technician.
The patients are Willie Smith, who has a history of two kidney transplants and is in line for a third; Raymond Styles and Evette Calloway, who both have a history of diabetes and hypertension; and Kim Davis, who initially started dialysis as a PD patient but had an inadequate membrane. One factor contributing to their ease of talking with each other is they know each other and, in fact, Smith and Styles sit by each other during dialysis, as do Davis and Calloway.
The author has nothing to disclose.
The content of this article reflects the personal experience and views of the author and should not be considered medical advice or recommendation. The content does not reflect the views or opinions of the American Society of Nephrology (ASN) or Kidney360. Responsibility for the information and views expressed herein lies entirely with the author.
J.S. Davis was responsible for conceptualization and project administration, and wrote the original draft of the manuscript.