Last year, I attended a medical conference focused on developing medications for kidney diseases. Unlike previous meetings, this conference was centered on developing upstream interventions, a welcome and very positive development for people with kidney diseases.
A nephrologist stated during a presentation at the conference that dialysis and kidney transplantation are barriers to innovation because they provide a “safe landing” for patients. When I heard this statement, I turned my attention away from the speaker to the audience to gauge the audience members’ nonverbal response. Much to my disbelief, the audience appeared to accept this statement as fact. Internally, I had a much different response.
Growing up, I saw my mom and her two sisters sustain their lives by receiving dialysis but with a diminished quality of life. I saw the constant fatigue and other quality-of-life challenges imposed by dialysis.
Beyond my personal experiences, it is important to look at the data. For dialysis patients, the 5-year survival rate is less than 50%, and there are still no fluid management guidelines. Although kidney transplantation is a superior treatment option compared with dialysis, half of kidney transplants fail within a decade, and some significant quality-of-life issues are associated with kidney transplantation (1). I can say without hesitation that dialysis and kidney transplantation are not a “safe landing” for kidney disease patients.
Shortly after this meeting, I was invited to be a part of the speaker faculty at Kidney Week 2017. My presentation, “Effective Patient Engagement Strategies to Develop Therapies and Advance Patient Safety,” had three learning objectives: to understand the barriers and patient perspectives on kidney disease clinical trials as an impetus for future research, to identify solutions to patient participation in kidney disease clinical trials and offer recommendations, and to create a vision for patient participation in clinical trials.
Pierre Antoine Brown, et al.. Factors associated with unplanned dialysis starts in patients followed by nephrologists: A retropective cohort study. PLOS https://doi.org/10.1371/journal.pone.0130080.
Peter G Linde, et al.. Overcoming Barriers in Kidney Health—Forging a Platform for Innovation. J Am Soc Nephrol 2016; 27:1902–1910.
Robert Cohen. A nephrology fellows’ communication skills course: An educational quality improvement report. Am J Kidney Dis 68; 2:203–211.