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Kidney Week

Abstract: SA-PO496

Patients Values and Preferences About Renal Cysts: A Survey

Session Information

  • ADPKD: Clinical Studies
    October 27, 2018 | Location: Exhibit Hall, San Diego Convention Center
    Abstract Time: 10:00 AM - 12:00 PM

Category: Genetic Diseases of the Kidney

  • 1001 Genetic Diseases of the Kidney: Cystic


  • Mustafa, Reem, University of Kansas, Kansas City, Kansas, United States

Renal cysts are a common incidental finding on radiographic imaging. While most cysts are indolent, individuals with such cysts are frequently monitored for interval growth and potential malignant transformation, which is ultimately rare.


We are deploying a cross-sectional survey to patients who have billing code for renal cysts and those who do not in the Greater Plain Collaborative (GPC) de-identified dataset. We developed and prepiloted a survey that assesses patients values and preferences about renal cysts. Here we present preliminary results from the University of Kansas Medical Center.


To date, there have been 71 respondents. The mean age was 61 (range 30-82) years. 4% were Asian, 3% were black, 91% were white and 56% were female. The majority of respondents were college graduates (33%) or possessed post graduate degrees (37%). 72% of people reported no family history of kidney disease, and 66% of respondents (47 people) reported being told by a doctor that they have a kidney cyst. Of those with a renal cyst, 24 reported having one cyst. 39 people reported having no treatment plan for their cyst(s), and of those who reported having a treatment plan (n=15), all reported follow-up visits providing a sense of security and reassurance. 12 of these 15 reported that they would worry more about the cyst(s) if there were no follow-up. 15 people with renal cyst(s) reported seeing their primary care physician for their cyst, and 30 people reported seeing a nephrologist for their cyst(s). Of those with a renal cyst, 34 felt their doctor considered their values and opinions regarding follow-up imaging for renal cyst(s). 29/71 respondents wanted to know more about their cyst(s), and 23/29 specified wanting to know more about how often it should be imaged, if there are treatments, and the risk of progression to cancer. 20/71 people reported feeling anxious or would feel anxious about their renal cyst(s)


There is wide variability in patient values and preferences regarding renal cysts and their follow-up. While some expressed concerns about the risk of progression to cancer, others were not worried at all. It is unclear if this correlates to knowledge about prognosis of renal cysts or perceived risk. Guidance on this topic is needed and could help physicians and patients with shared decision making regarding renal cyst management.


  • Other U.S. Government Support