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Table 3 Sample Quotes re. Usefulness and Impact of ePRO Collection for Nurses

From: Evaluation of real-time use of electronic patient-reported outcome data by nurses with patients in home dialysis clinics

ePRO data was used to:

Provide focus: “Be patient-centred”

I look to see what is a problem. I ask the patient, repeat the question to the patient, and get them to give me their answer of why they put what they put - just to make sure that they didn’t misunderstand it, misconstrue it, or do whatever, and maybe there’s things in there that um they don’t like to discuss, but at least we can see first-hand what the problems are.” (Nurse 1)

“It’s not just symptoms, it’s what’s going on in the patient’s life and addressing them. They are not just a symptom checklist; they’re (pause) - they’re a person that goes through stuff in life and with whatever they’re going through in life they are also living with kidney failure.” (Nurse 3)

“Because it [ePROs] would kind of guide the direction of the clinical assessment. And then when we go through the rest of the clinical assessment, all of this is on there and then you can just breeze through it quickly. But if there was something that was triggered here then you kind of go into it a little bit more.” (Nurse 2)

“Um well, I think it [ePROs] definitely points out something that is hidden, so it is definitely showing there’s things that we are completely missing - like we’re totally missing ‘x’ with this person and it’s really important to them even though we’re trying to ask them those questions but we’re not getting that information. That’s been really good about this.” (Nurse 5)

Direct interdisciplinary team follow-up: “It’s a team thing”

I think I bring things up verbally as well to the nephrologist if I had some, you know, some area of concern. I would talk to the nephrologist prior to the patient going in to see them because you may not get all your notes written down.” (Nurse 4)

“Ah, well, I guess it depends on like if it’s a depression issue, ahm we talk to [the social worker] about it. If it’s maybe an appetite or nausea issue, it might be a dietician thing that they could help with. So we communicate with our team quite a bit - especially [the dietician].” (Nurse 2)

“The appetite and nausea, I touch on it but I almost always, you know, say ‘Well of course we’ll speak to the dietician.’ She’s the expert. And I encourage people with psycho-social issues, I encourage them to speak to the social worker, but I don’t cut them short, I don’t. You know, I give them some airtime because they’ve privileged me with the information, I’m not going to minimalize it in any way. I will hear their concern a bit and touch on it, but yes, of course I’ll encourage them to talk to [other clinicians].” (Nurse 6)

Offer support to patients: “Brings an awareness”

“I think it’s improved probably the interactions that we have in our clinic when these patients are, you know, filling out their surveys and are getting these visual tools … you can’t help but look them over and over and address things.” (Nurse 8)

“Well I think it’s always beneficial for the patients to be aware of their health and what they can do and make changes to improve it. I mean having them involved and seeing them, writing down a score, I think it’s another (pause) visual so they can say, I feel that - I think that helps them understand. I mean it’s like getting your lab work, you know, you see the numbers.” (Nurse 4)

“When they’re sitting in the waiting room, filling in [the ePROs], they can be a bit more honest with themselves and then that is very revealing to the healthcare providers.” (Nurse 6)

“So it’s just, to me it’s a tool to try to help focus on trouble areas but knowing a person may or may not be comfortable discussing things with the nurse…I’ve heard people say to me that they don’t want to disappoint me. I’ve been their trainer, their educator, and my role with them has been that way even though I feel like I have a good rapport with the person and spent lots of time with them, they may not have told me anything about their feelings of anxiety and depression.” (Nurse 5)

Used of ePRO data was impacted by:

Visual display: “It jumps out at you”

I think I do like having a big box of colours cause it draws your eyes to it quicker than maybe, you know, the circling the symptom checklist [on paper]. I think just in the drawing, you know, you focus to the colours, big bars, they kind of stand out more.” (Nurse 4)

“It gives nurses a visual tool - that’s what it is.” (Nurse 3)

“The one thing that I found was the questions, like these were very small…..Just because the thing that you see is “question 7” but “question 7” doesn’t mean anything to me cause I don’t know it. The symptom is under that typing, until I look. So that was just the one thing I found a little bit small and sometimes sort of like, what am I looking at?" (Nurse 7)

Integration with workflow: “Long-term picture”

“I’d like to see trends, right, like I would like to see maybe not only this [ePRO results], but a printout of, you know, what are the trends in their pain, on an upward or downward? Yeah, I think that’s important, right.” (Nurse 9)

“If we’re not getting a report to say where the trends are, but they are at their end of life, you know. So we’re supporting them. And at what point do they say, ‘I’ve had enough?” You know, but we are aware of them…When do we say, or they, say it’s enough?” (Nurse 4)

We’re “using the [ePRO] data to supplement the charting.” (Nurse 8)

“Cause it makes no sense to do this if it is a tool that helps us at the moment, but I want to see that moment over time just like any lab record, I want to see it over time, over the year.” (Nurse 4)