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Table 3 Selected illustrative quotations

From: Patient and provider experience and perspectives of a risk-based approach to multidisciplinary chronic kidney disease care: a mixed methods study

Category Illustrative Quotations
Patients and Providers
Targeted care Patient: We have been discussing the issue for 6 months or once a year for awhile and I assumed when they gave me the letter saying that I was now below the 5% threshold for likely dialysis in the next 2 years and would not be using the clinic facilities completely but simply meeting with [nephrologist] that would probably would go to the 1 year [appointment] and when we talked about it this February we decided that would be frequent enough and he is available if something happens. If nothing happens then he can spend the time looking after those who still have more need than I do. It was included in the letter that said that due to this grading, I would no longer make use of the kidney clinic service, but only the nephrologist.
Interviewer: and what did you think of that letter?
Patient: I thought it was very appropriate. We need to conserve our resources and use them where they are needed and I think at this point in time, that was something I didn’t need, so I know there’s always more people, there’s more demand than we can meet.
To make sure that people actually get appropriate care, that the sick people are being seen where they should be seen. (nephrologist)
I think yearly is fine you know, as long as I’m stable there’s no point in me going in every 3 months, so she can tell me that ‘yup, everything is stable’. (patient)
It’s changed my practice … there are some people that I probably wouldn’t have referred previously because I was using a GFR of less than 30 with evidence of decline and complications. So, now the people who might have a little bit higher GFR but are at high-risk, I’m referring those people. (nephrologist)
Access to resources outside the multidisciplinary CKD clinic I don’t really have to access [allied health professionals] other than going to my pharmacist … as far as dietitians, when I do see one, they are pretty helpful but … everything is pretty stable, I’m up to yearly visits with [my nephrologist] and nothing has really changed. (patient)
Patient: When I do my bloodwork in between [general nephrology appointments] I get it [the results] from my family doctor rather than from the clinic.
Interviewer: are you comfortable talking about your CKD with your family doctor?
Patient: Yup, no problem at all, he’s well aware of it and has kept up even when I was doing the clinic. If there were any questions that I had in-between I was able to get him to look them up and deal with them.
I did rely on my nurse [case] manager quite a bit. She was my go-to person … I don’t have that anymore, but [my nephrologist] has made sure I have a phone number to phone if I need something, but it’s not as direct as dealing with [the nurse case manager]. (patient)
I haven’t discharged [low-risk patients] from [the CKD clinic] back to their primary care provider because I have absolutely no confidence that the right amount of supervision and care will be applied to those patients. (nephrologist)
I think really the only thing would be that, I mean even though patients that have higher GFRs and do fall in that KFRE where they are low risk...they still do have questions, I think they can still sometimes use guidance you know, for concerns around their kidneys and things like that, so you know the only thing is that they don’t really have that kind of easy accessibility to a nurse or to someone to call about their kidney issues, or you know that kind of thing. So, you know the only thing is, then they don’t have as many resources. (nurse)
I’ve really tried to direct them to the [primary care networks] PCNs … if someone is at low risk of progression to kidney failure, why are we using resources that are in limited supply? (nephrologist)
There needs to be a general focus in the CKD clinic on respect for the work of family physicians. Too often I hear negative comments that may serve to undermine our family medicine colleagues. (nephrologist)
Self-efficacy I do a pretty good job of keeping track of what I should eat and should not eat...and it seems to reflect in my [bloodwork] levels … it’s not really a high rate of kidney function but it stays the same. So this charting of it helps me know what to eat and what not to eat. (patient)
Going to a GP [General Practitioner] just to get lab results seems a little bit excessive... [A patient portal to access lab results] would be marvelous. (patient)
I would use [a patient portal to access lab results], absolutely, that way I don’t have to wait and see [my nephrologist] … because then I can do things before I see [my nephrologist] (patient).
They will allow [online] access to bloodwork at one point... I think that will help because most of [patients] just want to know their numbers, they don’t ask us about anything and just want to know the numbers. (nurse)
Patient reassurance and reduced stress Having that equation and knowing that the chances of me going into kidney failure in the next 10 years is extremely low was quite reassuring. (patient)
It actually really helps, really reassuring the patient and making sure that they are aware of what their risk is and I think it paints a really good picture and it’s a really great educational tool. (nephrologist)
I miss not talking to them [the nurses], but I’m glad I don’t have to do it because it’s difficult for me to get there...I’m not unhappy about not going. (patient)
Some of them are quite happy. Some of them are really happy to back to their GP, it’s just one less appointment that you know they don’t have to come as often. They feel like...they are getting better somehow and they are happy with it. (nurse)
Transition process for low-risk patients I would say about 90% of them [patients] have proven not to have any problems [with the discharge from the kidney clinic], but I do have patients that call and say, well ‘my medication’s run out and I need to renew and I don’t know what to do’. Previously, I had always contacted the pharmacy and make sure that any renewals get faxed to the nephrologist office to get renewed. (nurse)
It came as a surprise to me, I wasn’t really expecting it, but I guess a little more information or explanation at that time might have been a little bit helpful. (patient)
For me, it’s just spending a lot of time with them and making sure that they really understand that their risk is low and that they are not being abandoned … It’s really the reassurance and, for certain patients, if they are still anxious and really upset … I usually just offer them either slightly more frequent follow up … for the most part there hasn’t been any major issues. (nephrologist)
I think a lot of doctors are supporting your tools and they are doing it really good and as soon as it’s [the KFRE is] less than 10% we discharge them [from the kidney clinic], but some doctors have a tendency to keep their patients with us because I think it’s easier for them because we provide support for them and they don’t have to, they have less to do, right and so yeah sometimes it’s not the best reason [to keep the patient in the kidney clinic]. (nurse)
Providers only
Anticipated concerns The nurses give the patients a confidence and an education and supervision that keeps them focused on doing what is, at least to the current literature, correct which is diet management, blood pressure management, medication adherence. (nephrologist)
I don’t know if the tool is predicting those high-risk patients who tank right away … I’m just sometimes a bit concerned about that. But, it’s hard for me to say if it was the same before [KFRE implementation]. (nurse)
Job satisfaction All my easy patients are not there anymore [at the multidisciplinary clinic]...I have to spend more time prepping my chart...I do feel that the workload has gone up a little bit … but that’s the right thing to do, that’s why they are there. (nephrologist)
I don’t think implementing the KFRE has dramatically impacted [nurses] workload. It has dropped their numbers substantially, yes. But, most of the patients they have discharged from their caseload … were the ones that didn’t call them anyway … it’s the really acutely ill patients that have been left on the caseload, so you know they had 160 [patients] and now they have 120 or 130 but they are the really sick 120–130 that you’re managing 80% of the time anyway and you know the [caseload] numbers look great, but it’s not indicative of the workload...the workload is still high. (nurse)
Lower caseload for case management and that gives us more time to focus on high-risk patients. (nurse)
We never have full staff. We always have to cover one another, so if we have three staff that phone in sick, [the] remaining three nurses have to double up their workload. (nurse)