Table 4 Exemplar quotes illustrating barriers to diagnosis and management of CKD in primary care, by themea
Domain/theme | Quote |
|---|---|
Beliefs about capabilities | |
Challenges educating patients | “I think the kidney is very complex…and I think patients have a hard time grasping kidney disease because they don’t feel it at all, they just don’t…. When you start talking pathophys to patients who are mostly, in my patient population, working class, blue collar, a lot of them have not finished high school, you just need to keep things very simple and I don’t think the kidney is simple.” [33] |
Challenging nature of CKD management | “If you are a young person with [CKD] four and five it’s much more clear cut as to what you are treating and how you manage it compared to an elderly person when there is all this comorbidity, you know, they have all got diabetes, they have all got ischaemic heart disease, very few of them have just got renal disease. The care is much more complicated.” [10] |
Challenging nature of CKD management | “If the blood pressure is high, I put them on blood pressure medicine, and I fixed it. If you have chronic kidney disease, you still have chronic kidney disease. You can’t fix it. All you can do is [ensure].. . it doesn’t worsen. We’re not helping…it’s not very exciting.” [8, 34] |
Beliefs about consequences | |
Cost and/or burden for patients | “Somebody’s taken a day off of work to bring mom in who has otherwise no transport, so that person’s already out of work. Do you think they want to take another vacation day to come back in two weeks? No.” [8, 34] |
Fear of frightening patients with diagnosis | ‘So, I try not to panic them ... they don’t like this CKD label, which is why I don’t tend to dwell on that, perhaps, very much, I tend to just skim over it and then go into the explanation rather than saying each time they come, “oh yes, and you’ve got CKD, haven’t you?” [7] “It’s like other things, if you use the word “kidney failure” or “heart failure” people instantly think “oh my goodness, I’m going to drop dead tomorrow”.” [10] “When I have had these consultations with patients, their face changes. You almost feel like you have kind of upset them, and it took a lot of my own energy and training to capture it in that consultation, bring them back and sell it to them to say, “This is no reason for panic”, but it always sounded hollow because they still remained anxious for quite a while. And I felt, when I spoke to the other GPs, perhaps that is why they kind of kept delegating it to different people rather than take ownership themselves, whereas they were much more comfortable selling IHD and diabetes.” [7] |
Lower priority of CKD as a clinical issue | “So I’ll tell you what, we have 49 diseases that we deal with in family medicine. Kidneys are one small one, and there’s very little to do with that repeat creatinine. There’s nothing that changes. So is it a priority? No. There are many other things that are higher priority.” [31] “I had somebody sitting in that chair yesterday—I was more concerned about their liver and he said “oh, how are the kidneys?” and they were fine, he’s got really good EGFR. He could live out his life without any problems but he’s now spending every day worrying about his kidneys. It’s medicalising something in the patient’s mind and exaggerating the impact of it on their lives.” [22] |
Perception that kidney decline is to be expected in aging | “I mean I think that’s the issue, because I suppose CKD in an eighty year old, you’ve got an eGFR of 59 (ml/min/1.73 m2), is that really CKD or is that just you are 89. I think certainly where I would hope the others have discussed, certainly I am, is ... if you’ve got CKD or you’re young and you’ve got proteinuria, definitely that is a really important thing to hammer in. But yeah, 80/90 year olds, I wouldn’t suggest we’re probably discussing it, if they’ve got a mild CKD3.” [7] |
Reactive focus to healthcare | “Until we focus on prevention and making people leaner, we’re not going to succeed” [5, 36] |
Environmental context and resources | |
Challenges using laboratory measures for CKD diagnosis or management | “The lab did not calculate the GFR.. .I think that we probably missed a lot.. . [because] a creatinine 1.3.. .looks all right.. ..” [8, 34] |
Lack of patient education resources | “There’s no kidney educator to send them to.” [33] |
Lack of renumeration for CKD | “Screening activity for any chronic disease is not Medicare rebatable so therefore not economical use of nursing time” [9] |
Limited access to nephrology | “Consultant appointments are too far out and unavailable when I need them.” [37] |
Technological issues | “I have patients that have truly had CKD 3 for 2 or 3 years, but nobody has really talked to them…I understand how that can be because it shows up as a normal lab…and I kind of feel like maybe somebody who has a GFR less than 60 who has CKD 3, even though their creatinine is in the normal range, maybe that shouldn’t just show up as a normal lab. Because when we’re so busy and you’re really quickly going through…sometimes people don’t see numbers; they see colors…if there’s no color coding, nothing that says there’s anything abnormal in this result, they may not even look at the results. They say okay, the computer is telling me it’s normal…” [29] |
Time/workload | “I think during the 15 or 20 min you have with the patient appointment, your agenda’s long. You need to deal with their blood pressure and their diabetes and they may come in because their back’s hurting or something else.” [8, 34] “Labs sometimes will be a little difficult because…that’s too many people to keep track of, but that’s how many more results that come into your basket. So then if you’re busy in clinic and then you’re busy managing, juggling some other things throughout the day, you probably won’t get to it till the evening, and sometimes you’re very tired.” [29] “I would say the challenge is they’re patients who have numerous comorbidities. There are time challenges for us with a busy office. They are patients who take a lot of time. They often are on numerous medications, they require a lot of blood work for monitoring, and they often have a high rate of hospital admissions for whether it’s their renal problem or it’s the diabetes, or there’s congestive heart failure, or pneumonia.” [27] |
Knowledge | |
Dissatisfaction with guidelines | “And I think because a lot of those guidelines and rules change over time, there’s just a lot of confusion. So I think it is kind of this squishy black hole to a lot of primary care doctors as far as the nitty gritty details.” [8, 34] “I’m going to assume that [guidelines] are evidence based or at least partially evidence based as much as guidelines can be because if you look at those guidelines in general they’re about maximally 14% evidence based and the rest is opinion, so I assume that they are approximately the same as every other guideline.” [31] |
Lack of awareness of guidelines | “I know there’s like the National Kidney Foundation, but I feel like the ADA guidelines are much more useful.. . I mean I certainly don’t know them [CKD guidelines] very well and I can’t visualize an algorithm from them.” [8, 34] |
Lack of awareness of resources/support services | “Did not know conservative clinic existed. Need to promote the palliative nephrology clinic.” [37] |
Perceived lack of adequate knowledge or training | “[there is a] barrier just because of my limited knowledge/experience.” [37] “I feel like there’s a lot of areas within medicine that I know a lot about.. .but renal.. ..It’s not my super comfort zone” [8, 34] |
Perceived lack of clear definition of CKD | “The initial question was what is your picture of chronic kidney damage, and honestly, that picture is just a check mark in a row of risk factors.” [35] |
Perceptions about patients | |
Lack of patient understanding of CKD | “[Patients] don’t understand what [CKD] actually means. Especially those who don’t really have symptoms, there are lots of people with CKD 5 that don’t have symptoms ... it’s “life’s all fine, how can my kidneys be failing? I feel fine” ... I think because they don’t have symptoms, often they don’t really understand the importance of it.” [10] |
Perceived low patient adherence | “It’s a willingness to change, it’s often diet and smoking related, so you’ve got the numbers and you try and work against the numbers, but you know in your heart that unless you put every single medication in the book into that person, and you’re not going to, you’re not going to hit the targets.” [32] “getting the patients to care as much as I do.” [28] |
Social influences | |
Poor communication between healthcare providers | “The disappointing thing was that once I made that phone call [to the nephrologist], I never got any documentation or phone calls back from that service, and I had to find out by reading in the newspaper that she had died.” [27] “Unfortunately, there’s a pretty big disconnect between primary practice and tertiary. There still is. There probably always will be because – there are some units which are very good at communicating with me and try quite earnestly to keep in contact, but other ones who don’t” [5, 36]. “…some of the medications that the nephrologists use I don’t use. I mean I don’t start [the patient] on it, but when they refer back I don’t know how long I’m supposed to keep them on the medications or is it safe. The last thing that as a primary care physician I want to do is hurt my patient. By not knowing that oh, you shouldn’t have kept them on that, well I didn’t know that. You didn’t tell me. There’s no note.” [8, 34] |
Social/professional role and identity | |
Lack of clear role delineation between healthcare providers | “And so then the [part time specialist in urgent care or the ED]…they say well, I’m only here once a week so I’ll just cc it to the primary and the primary will deal with it. And the primary says hey, I didn’t order this lab. I don’t own the lab… so whoever ordered it…I’m assuming is going to manage this and take care of it and…let this patient know. So, there’s that. I think that’s probably one of our bigger gaps.” [29] “Often I’ll send them in with all their blood tests and they’ll immediately do another set at the hospital” [5, 36]. “And I don’t feel like the nephrologists do a very good job of like sending [a consult note]- - to me to say I’m following her, you’re following her, is somebody following her.” [8, 34] |
Perception of role by other healthcare providers | “some general practitioners do not believe the nurse should be screening or consulting with patients as they believe that it is their role, not the nurses” [9] “And you do get judged by your lowest common denominator (…) you only need one or two bad stories and then that sets a reputation within the system that ‘We don’t trust GPs’ or ‘GPs don’t do this well’” [5, 36]. “…they just don’t get the relationship. They really don’t understand it…you guys don’t even say thank you. I’m referring my patient to you. You do not give me the third degree or say what I have to do….if we’re going to jump through hoops [for you] to see my patient then okay, I’ll send my patient somewhere else. You can’t do that in private practice so the nephrologist or any specialist is not going to do that. They’re going to send a note, they’re going to say thank you for sending your very lovely [patient]...” [8, 34] “…but I can tell you that a lot of times even though I’m extremely well-trained, [to the nephrologist] I’m [the] stupid primary care doctor who doesn’t seem to know anything…” |
Patient perception of roles of healthcare provider/s | “And a lot of patients will just ignore what the specialist says because they trust their primary care doctor, and so you find out…six months later that they were supposed to be taking something different as far as the nephrologist was concerned” [8, 34] “some patients believe it is their doctor’s role to discuss their health concerns, rather than the nurse who is only there to perform basic care” [9] “…they [patients] also spent $60 and they’re like why don’t you just do that? He [the nephrologist] didn’t do anything that you didn’t do” [8, 34] |