ADPKD: Engaging Patients and defining outcomes
We are interested in hearing from all of you!!
An Ethically Diverse Focus Group
funded by the Clinical and Translational Science Awards (CTSA) consortium, Frontiers: University of Kansas Clinical and Translational Science Institute
Quotes from participants…
”There are words in your medical field that have no meaning to us, and there are things in our fields that have no meaning to you.”
“How is it hereditary when I'm the ONLY one in my family that has it? And I have a really big family”
“All the woman first had PKD, and then it started with all the men, I don't know how that happens.”
“There is a delay in receiving information, we don't get the information until we get to dialysis or a little before.”
“How come we weren't included from the beginning? We were the sickle cell people; we were the lupus people. This was not us. This was not our disease.”
“The doctors gave me all these complicated words, and they had the nerve to actually ask me “do you have any questions?”
“I know the only reason I work at a hospital, is because it is easier to get my insurance. I mean I am happy there; but I don't think I would think about other career options because of my PKD.”
“I have been denied of life insurance because of my kidney disease.”