Table 2.

Illustrative quotations about barriers to predialysis vascular access care from focus group and interview participants

Patient barriers
 Experiencing negative emotions
  Fear Patient with CKD: “I was worried and angry as all heck [when I found out I needed dialysis].”
Patient with CKD: “The thing is I don't really want to talk about it. No, I haven’t talked about it yet. I had an appointment at one time. I just didn't go because I was scared.”
Patient on dialysis: “There's worry your life is changing. There's worry about the surgery itself.”
  Denial Patient with CKD: “When I first heard about [needing AV access], it actually made me not want to come back. So, I just shut it off. I just didn’t want to face it, so I didn’t go.”
Patient with CKD: “I’m trying to avoid [follow-up for his AV access].”
Surgeon: “[Patients] kind of want to ignore it until they’re admitted with a catheter. They might’ve even been someone we saw, who's like: ‘Yeah, I don’t know, I’ll call you back. I’m not sure I want surgery next week. I’ll get back to you about that.’ They typically don’t get back to us till they’re on dialysis.”
  Uncertainty Patient with CKD: “Anything unfamiliar to you, you tend to worry and dread it coming. You know it's got to happen, but it doesn’t make it any better.”
Patient with CKD: “I constantly worry that I’m going to, like, in life, you know, you just bump my arm, or fall. I don't know how fragile that [fistula] is, like how much I should be worried.”
Patient on dialysis: “Oh man, just the stress, like to kill me. Because, you just don’t know really what's going to happen.”
Nephrology clinic nurse: “It's very difficult for people to make those decisions, and there's always the hope that their kidneys are going to recover.”
 Having inadequate vascular access and dialysis knowledgePatient with CKD: “If I could have gotten more information on what to expect after the fistula was done. Maybe that would have helped me feel a little more reassured.”
Patient on dialysis: “I took the Kidney Smart Class, and they did touch on [AV access], but not enough to really let you know what you were getting into.”
Caregiver: “See his [fistula] was in, but his kidneys went that fast. There wasn’t time for it to mature, and he had to get the catheter. There was no head's up that something like that might happen... Things happen. There's going to be hiccups along the way—having the conversation about things like that is good. But you don’t hear that.”
Surgery nurse: “A large majority of the time, [patients] have no idea why they’re here. They have no idea what a fistula is. They have no idea what a graft is.”
Access center nurse: “When they get to me [vessel mapping], they don’t even know the difference between a fistula and a graft, and some people think they will have stuff hanging out of their arm. There's very little education.”
Health system barriers
 Poor interprovider communicationSurgery nurse: “There needs to be a single person who can help facilitate all these patients that is in the know versus us doing our thing, and nephrology doing their thing. I think it would help if there was a single person monitoring all these patients and has a means of getting in touch with them.”
Access center nurse: “You’ve got the nephrologists in this medical record, the access center in that record, the surgeon in another. You’ve got a lot of turning wheels in one patient, and the doctors are not on the same page.”
Interventionalist: “I think multiple specialties working collaboratively to deliver a service is important.”
Lack of a centralized approach to care navigation and patient monitoring
Patient with CKD: “I’ll tell you though, it's hard getting through to anybody in the hospital anymore. You call, and you get switched all around.”
Care partner: “His vascular surgeon is at so many different sites, he never has time to keep track of you.”
Nephrology clinic nurse: “I think the biggest barrier is that there's not someone guiding them through the process… there's a lot of follow-up that has to happen, and there's not one person guiding that sort of journey.”
Surgeon: “They have a hard time navigating the healthcare system. It's often a multistep process. You see your nephrologist, you get your mapping, you see your surgeon, you get a surgery date, you might have something else in between. So, all those little things, you know, if there's someone who is identifying all these little bumps in the road and getting the patients through them, that would be helpful.”
  • Focus group participants included patients and care partners. Interview participants included nephrologists; surgeons; interventionalists; and nephrology, surgery, and radiology clinic nurses and schedulers. AV, arteriovenous.