Background
Methods
Overview
Study participants
Data collection
Nephrology providers
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Primary care providers
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Challenges to RRT preparation
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• What are the biggest challenges you face in preparing patients for renal replacement therapy? | N/A |
• What factors make it difficult or easy for you to support your patients’ decision making? | |
Experience with collaborative preparation
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• Please describe your experience with collaborating with patients’ primary care providers? | • For your patients who are also cared for by a nephrologist, what has been your experience with that nephrology practice regarding receiving communication about patients’ preparation for renal replacement therapy? |
• What makes it difficult or easy for you to collaborate with primary care providers? | • How involved are you with helping patients prepare for renal replacement therapy? |
• How do you see your role? | |
• Would you like to be more involved? If yes, how would you like to be involved? |
Analysis
Results
Nephrology providers’ perceived challenges to patients’ adequate RRT preparation
Themes
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Subthemes
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Type of providers identifying
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---|---|---|
System-level challenges | ||
Limited time for optimal patient preparation | • Limited time to prepare | Nephrology |
• Limited time to build trusting relationships | Nephrology | |
Referral process delays | • Delays in referral to vascular surgery | Nephrology |
Poor primary care/nephrology co-management | • Poor information exchange | Nephrology and Primary care |
• Lack of patient CKD education prior to nephrology referral | Nephrology | |
• Poor delineation of roles | Primary care | |
Provider-level challenges | ||
Provider difficulty with explaining CKD and confirming patient understanding | • Conveying CKD in lay terms | Nephrology |
• Uncertainty about patient understanding of RRT options | Nephrology | |
Patient-level challenges | ||
Patients’ poor acceptance and understanding of CKD | • Denial of CKD diagnosis and/or severity | Nephrology |
• Poor understanding of CKD | Nephrology | |
• Low awareness/understanding of treatment options | Nephrology | |
Patients’ low perceived urgency for RRT preparation | • Delayed preparation because asymptomatic | Nephrology |
• Poor compliance with RRT preparation appointments | Nephrology | |
Patients’ negative perceptions about RRT | • Fear/anxiety about dialysis | Nephrology |
Patient cultural or language differences | • Patient preference for alternative treatments | Nephrology |
• Poor patient understanding due to cultural and/or language differences | Nephrology | |
Lack of patient trust | • Low patient trust in health providers | Nephrology |
System level challenges
Nephrology providers’ limited time
“…there’s not enough time to build a solid relationship …with the patient, before the idea of renal replacement even comes up and so partly that results in many catheter starts…instead of fistula graft starts and really an inability to refer for preemptive transplant often.”(Physician)
Nephrology providers’ difficulty obtaining vascular access referrals
“…it’s becoming increasingly difficult to refer them out to get their vascular accesses placed… [It’s] becoming a little more complicated with trying to get prior authorizations and so on.”(Physician)
Poorly integrated primary and nephrology care
“One disappointing thing is that the average rate of communication the other way around for me to them is 100% in my patients. Every single note that I generate goes to the primary care whether I like it or not, getting notes from primary care doctors is less than 10%, maybe less than 5%, and that’s bad because that is a big source of miscommunication, things not done properly or whatever so that’s my concern.”(Physician)
“I would just want to have primary care providers understand the dilemma that we get into when referrals come late….it’s just so much more distressing for the patient because a lot of the late referrals they’ve either never been told anything about the fact they have kidney trouble or they have but it’s been so downplayed and pushed aside that the actual severity of it is completely shocking to the patient once we talk to them about it.”(Physician)
“I would like [to get] the sense more of teamwork….I would like to be thought of and operate as a respected colleague who actually probably knows the patient much, much better and will see the patient quite frequently. That one doesn’t always have the sense that is the attitude of many such specialists, including many of the nephrologists” (Physician)
“Well, I think we’re there as a helpful role to the patients because you know often we’ve had a long relationship with the patient and they trust our opinions. So I think, you know, we do play a big role in ultimately helping them make their decision…” (Physician)
“Well I think my role obviously is first of all to try to prevent [ESRD] from happening in the first place. But my role [related to RRT preparation] is to try to help the transition be as smooth a one as possible to help the patients have as few complications as possible and to help support the relationship that they have with the renal service and then eventually with dialysis.”(Physician)
Provider level challenges
Nephrology providers’ difficulties explaining CKD and confirming patients’ understanding of CKD
“…there might be something that you’re not asking that….they’re not telling you, so you can’t answer the question in order to help them make a good decision.”(Physician Assistant)
Patient-level challenges
Patients’ poor understanding and acceptance of CKD
“They do see so many of their family members going through the same sorts of things that sometimes they just kind of want to stick their heads in the sand and ignore that maybe that’s going to also happen to them.”(Physician Assistant)
“… [Some patients] will not allow me to initiate dialysis because they feel uncomfortable. They don’t think it’s necessary even though I try to explain why to them, and it’s hard for me sometimes to break the barrier. I don’t know how to address that…” (Physician)
Patients’ low perceived urgency for RRT preparation
“The other thing that’s difficult is people that say I’m just going to wait until I’m sick; I feel fine now. Trying to get them to agree…to choose a modality and then make the preparations in advance is very difficult.”(Physician Assistant)
“…people think if they prepare and get a fistula placed, they’re going to need dialysis sooner, like they’re on the track versus if they just avoid it maybe they won’t need it as soon.”(Physician Assistant)
Patients’ fear of dialysis
“…there seems to be this stigma attached to it that is once you start bringing up dialysis, it’s over. They may as well start getting their will together, and it’s just sort of a terminal pathway, and one thing I hear a lot is oh no, no, no because you know I knew this guy and I knew this woman who they went to dialysis, and a month later they were dead.”(Physician)
Patients’ cultural beliefs or language differences
“We do have some patients taking herbal preparations that have been found to be damaging to their kidneys and it’s really difficult to convey respect for their culture and that approach, at the same time saying it’s damaging and it’s not helping you.”(Physician Assistant)
Patients’ lack of trust
“I’m certain many of them don’t trust us, what we are saying to them. They don’t feel as sick as we say they are. So they just don’t feel inclined to do these things ahead of time.”(Physician)