Table 3 Additional selected participant quotes supporting identified themes and subthemes

Integrating care for interrelated symptoms

Patients’ high symptom burden, complexity, and interrelatedness are well suited to an interdisciplinary approach. The hemodialysis unit can serve as a hub to coordinate interdisciplinary care given its convenience, familiarity, and access to comprehensive kidney care resources and personnel. Interdisciplinary team members assume defined yet fluid roles in addressing concerns identified by PROMs and their underlying physical and psychosocial contributors

“You need a team”

"I did see a patient who all of them [symptoms] were moderate to severe, and I said, ok this patient must not have understood the survey, must not have done it; however, when I spoke to them it was true. And that’s the sad part. And the worst part is, I cannot pick three [symptoms]. The patient can't even pick three. I had to go through everything, but it turned out they are all correlated.” (Nurse 10)

“[Kinesiologist] will deal with the pain, fatigue, poor mobility, and the restless legs, because she tries to use exercise to help the patient… Let’s say if the patient [has] the pain relieved, then maybe the patient has better sleeping. And maybe if the pain is relieved, the mobility is better.” (Nurse 20)

“You are lucky if you have a pharmacist, only certain units have a pharmacist… So that’s kind of sad. Our team is pretty small. It’s really just the charge nurse, bedside nurse, and patient.” (Nephrologist 6)

“Even with EMPATHY, you can't go and grab every symptom. Those are the main 13 [symptom] questions. There’s a lot more that goes on in life of the person with kidney disease. Like, I have all the top three symptoms, sometimes I don’t have the symptoms, sometimes they come back.” (Patient 3)

Conducive setting

“They [patients] do trust us with their whole life, so they will tell us things that they will tell nobody else. I think because we are given that confidence from them, then we take that on for them.” (Nurse 12)

“As for the [EMPATHY] surveys, I think the best time to do them is when you are on dialysis because a lot of times you are looking for something to do anyways.” (Allied health professional 2)

"If I have an issue on the weekend and I’m coming here on Tuesday, I don’t even call my GP [general practitioner], I just come here. I know there’s going to be a doctor coming around, and if he says to do follow-up with your GP, then I’ll do it. A lot of times I can get good answers right here.” (Patient 1)

“It’s all electronic, and that’s how we are communicating. So I’ve been totally involved, I’ve got binders and all my blood work and all that stuff, I’ve got a paper copy… I take [my symptom reports] to my family doctor for example… I’ve shown him that, and it’s above his head… he’s overwhelmed by kidney disease, he doesn’t get it.” (Patient 3)

“I tell them that I appreciate their [dialysis staff] opinion because it’s good to hear someone who has experienced it and works here at the same time. It’s a kidney clinic. Rather than listening to an outsider that has not experienced it, they have experienced it, but at a different level.” (Patient 12)

Role clarity and collaboration

“I found it quite interesting the similar trends that came out in all the patients, and especially a high focus on the anxiety and depression that we don’t really hit on that much. It opened a lot of dialogue among the staff and on our different committees about what we can do better about that.” (Nurse 1)

“We are not just the nurses here. We are the mini social workers, we are the mini dietitians… we are mini technicians when the machines break. We have to do a lot of stuff I think that maybe in bigger centres, you have individuals for these jobs.” (Nurse 8)

“I truly believe in my everyday nursing, I try to look at the patient holistically. When you see them frequently then you can assess whether things have changed, like emotionally or physically and then with bloodwork. So something that we are doing all the time.” (Nurse 18)

“The nurses have gotten stronger in their ability to present the patient’s case to the rounding physician. They are more comfortable with it than they used to be… The individual nurse providing care is speaking to and using the rounding tool for that purpose and I think the EMPATHY [symptom] reports and this whole approach is strengthening that.” (Allied health professional 3)

Streamlining information sharing and access

Serial capture of PROMs creates a central repository of patient-focused information to which interdisciplinary team members can refer for surveillance of patients’ concerns and responses to therapy over time. Accessibility of PROM data across sites and providers helps to streamline processes for escalating and documenting care approaches. Visual and tangible resources (e.g., PROM reports, treatment guides) can be integrated into care discussions with patients and between clinician team members

Symptom data repository

“Sometimes we miss some parts of the information, but those EMPATHY reports, they have everything, so it’s easy for us too.” (Nurse 3)

“We do put on there [rounding tool] what we have given them and also chart it in [electronic health record], and then hopefully whoever has given the handout will indicate that and then you say, ‘Oh, I see you’ve been given a handout. Did anything on that help?’” (Nurse 16)

“I know that now at least we have access to [symptom reports and handouts], because every single computer now has that link, so I think that helps.” (Allied health professional 4)

“There’s going to be consistent notes of what’s worked and tried, has been trialed and failed… I think EMPATHY is so important and those issues are probably the most important issues to our patients. I’m sure they could care less what their phosphate is, but I don’t think you can make significant differences unless you have some consistency and some communication between practitioners.” (Nephrologist 4)

“No, I haven’t [seen a symptom report], at least I don’t think I have.” (Patient 20)

Common language for coordinated care

“I think maybe [I am] charting more, and I’m getting a lot more referrals, which is great, from the nursing staff. That’s changed a lot.” (Allied health professional 1)

“They were marking down what handouts the patients got, and I think that was supposed to trigger other team members so that they could follow-up with them if they felt they needed to.” (Allied health professional 2)

“They use the resources. They use pharmacy. They use social work. Not all patients have that [internal drive]. I think we need to give them the language, because if you give that to them and teach them how to speak that… common language, right? ‘What are your stop signs?’, ‘What would you like to do today?’” (Nurse 12)

“We are referring right away. If they are weak, right away we refer to the kinesiologist, she’s following up. Anything to do with anxiety or depression, I refer them to the social worker. For any of those nauseous, [I] refer to dietician and they email me back right away and say, yes, I’ll see them tomorrow… It’s been good.” (Nurse 19)

“Even though they can give me a tip sheet, most of that stuff I’ve already tried it. Been there, done it. That’s when the communication comes in with the nurse that’s there. I don’t know if that’s happening in other units, I’m not there. I can see that happening [here].” (Patient 3)

Reshaping expectations

Patients’ disclosure of symptoms and concerns using PROMs leads to expectations of treatment, follow up, and observed improvement. The chronic and complex nature of kidney failure means that symptoms often persist despite appropriately escalated therapy. In such circumstances, the interdisciplinary team plays an important role in validating concerns, reframing illness expectations, and assisting patients and their loved ones to develop coping strategies to live well

Expectations for follow-up

“It takes all this time and effort and you are doing the survey one-on-one with the patient and then you have to chart it all and then go through all the teaching and the handout sheets and everything, and then nothing gets done.” (Nurse 14)

“If you have that [symptom] going on for, never mind two or three months, maybe even just two or three weeks, I’m sure the patient, they just throw up their hands and say, ‘Thanks for asking me about my symptoms, but what’s the point because no one is doing anything about it?’” (Nephrologist 2)

“It’s a team process, and the patient is at the centre… Maybe [patients] have some ‘concern fatigue’. Maybe every week they tell people what their concerns are and nothing ever happens, so pretty soon they stop bringing it forward. Hopefully EMPATHY has made that a little bit better.” (Nephrologist 6)

“We do get asked every run if we [have] nausea, vomiting, diarrhea, any pain, bleeding, or falls, which are obviously good questions. Necessary to know. But I think that I wouldn’t have the conversation unless it was something that was really bothering me, and then I don’t know that anything really becomes of it… I feel like the nurse maybe thinks that I’m just venting.” (Patient 6)

“The surveys are great. I think the survey helps everybody, if they listen to it.” (Patient 13)

Managing symptom persistence

“People just want to be heard as well, and it’s communicating with them. I think a lot of apprehension is not knowing what to expect… When you talk through things, that helps alleviate a lot of anxiety, that what they are experiencing is where they are going to be at. And, bit by bit, it will improve, because the thing that I got from him [patient] was he wasn’t really given the true expectation. We see that all the time.” (Nurse 6)

“We do a bit of expectation management, maybe not CBT [cognitive behavioural therapy] per se, but readjusting our mental state to attack the problem from a different angle or to recognize the limitations of dialysis.” (Nephrologist 4)

“Commiseration is not helping you. Thinking, ‘Why me?’, is not going to help you. You have to be [an] optimist and believe that something is going to be better tomorrow or later on… because if the [clinicians] are treating them the way they are treating me, there is no way to for them to feel so bad.” (Patient 4)

“For example, some days I have really bad bone pain and I am already doing all of the things that I can do to alleviate that. There’s been suggestions that are always welcome, but sometimes this is just a problem I have that nobody can really do anything more for.” (Patient 6)