Table 2 Themes and exemplar quotes

Value of risk score

Advantage over current self-monitoring

• The information isn’t of use to me, speaking personally. I get the copies of the lab results. I track them on my cell to see how progression is. I think they’re moving away from the old model whereby you know the doctor has the information, tells the patient what to do

• did we need the risk calculator to get us on track and just have more self awareness? No, I think we just had the right communication with our physician and the right information on how to interpret results from the lab

• for me the number is a very small part of the story and I want to know what I can control and what’s potentially controllable because that’s what I can act on. If I’m just given a number, I mean the number itself doesn’t really do anything to help me practically. It just gives you an idea of the statistical likelihood of something happening

Any information is useful

• I think it’s useful for a patient to have that information as well

• More information is better. I like to know as much as possible.

• I don’t see any disadvantages; I see many positives to sharing this information with patients

Benefits of risk score

Understand health status

• it just gives you a sense of direction or piece of mind I guess, knowing what your numbers are. When you get diagnosed, you want to know more, you want to know, ‘Okay, what the hell, what am I doing? Where am I going? What’s my direction here?’ So a little bit more of that is always a positive

• it reflects on what the status is and the prognosis; it’s a fairly measurable quantitative assessment of where you are right now

Periodic use could show changes or improvements

• my early diagnosis would have had a very high score of potential failure within a short period of time; treatment began and we levelled off. And I would suggest that if we were to repeat that, my score would now be lower than it was. So I think knowing at the beginning and then repeating the, to show we are making progress or we are at least managing the condition would be a great indicator for me. It would show the efficacy of the treatment that I’m receiving

• What is the frequency that we do this calculator? If I do it every week am I gonna benefit? And then plotting the outcome of this over a five year period where I’ve done it every three months or every six months and now I can see the curve changing to flatter or zero. If it changes to zero or if it goes negative, and I growing new kidneys? So anything like that to give me a clue?

Influence life choices

• certainly would make different life choices based on any percentage chance if I thought of having a significant risk of dialysis for … even a transplants … accelerate travel choices, the lifestyle choices, job choices and frankly would be quite a significant set of changes based on that information

• So renal failure within 10-years, I’d probably die of something else. Renal failure within 15 or 16 or 18 months, I’m gonna maybe make some choices, changes

Basis for patient-provider discussions

• These are the kinds of conversations that the physician and the patient need to have in the early stages of diagnosis because an education, the education curve is steep to try and understand renal diseases, not a simple thing and to try and get your head around all the metrics that we all track is a considerably complicated activity to learn to manage. So in the initial conversations, keep it simple, and let’s gradually add complexity over time to help me better adapt to the onslaught of information that you get on the first day of diagnosis.

• it is definitely overwhelming, the number of metrics you have to understand and learn about. It maybe a good tool to just summarize because it is a really overwhelming and as soon as you get that diagnosis, it would be simple enough to have a number

• I was very fortunate to have somebody, like a team, the physician and the research scientist or technician, I’m not sure, help me interpret these things. So it wasn’t always a physician

Prompts discussion when physicians not forthcoming with information

• I would imagine that there is some unevenness throughout the province; this could be a way of going about standardizing it, simplifying it as necessary to deal with the amount of information. But also to make the information as available

• if it acts as a conversation starter, or someone asking questions, then that’s good. I guess a patient asking questions is good because when I was first diagnosed, I feel very well taken care of at this hospital. When I was first diagnosed I had a doctor who basically said, this is something you’re gonna have to live with. You know there are a couple of other treatments but you don’t want to do those and we’ll just put you on the ACE inhibitors you know. And I felt dismissed. I wanted to know more and I wanted to know what was possible.

Harms of risk score

Risk score could cause concern or anxiety

• If there was a very high reading, what does that do to you mentally?

• What about the situation where you log in and see the data and it’s like 99%, what is there for people like that with a mental reaction?

Should ask patient if they want to know the risk score

• it all depends on the patient. Some people might react in negative ways to that information or be overcome with anxiety. And so I think it’s important to ask the patient if they want to know

• that’s a discussion between your physician and yourself, do you want to know? If something’s going wrong, I want to know. But it might not be the same with everybody else

Physicians should check emotions on an ongoing basis

• when you have the meeting and you get your diagnosis; there’s a lot to process. I processed my own emotion slowly and so the impact didn’t really hit until a few days later. But if I had known there’s a follow-up appointment in a week or two to go back with questions and ask my doctor, maybe and that would be a good time to say, how are you feeling? But in that diagnosis meeting, of course there might be an immediate reaction but it’s the long term reaction or the slower reaction that’s gonna affect you for a longer time

• depending on the physician, patient relationship, getting over that hurdle of how should we approach the psychological impact of being diagnosed with something that we can’t do much for you other than renal replacement. The whole concept of renal replacement as a treatment option, it just sounds horrible. That doesn’t look like a really great treatment option. I don’t know if other people feel the same way. I hate the thought of begging for a kidney. I hate the thought of using any kind of dialysis. Dirt nap sounds a little better.

Desired adjunct information or format of risk score

On it’s own, risk score not useful

• Narrowing it down to one number, one percentage seems like an oversimplification. It’s nice to have that, an idea of sort of where you sit statistically, but it doesn’t give you an idea of how you can change your lifestyle

• You get a number, what does that mean? Is there a little report that comes with it?

Discussion with physician essential

• one caveat is if there was a little percentage chance that it could be a false negative. That this is something that could be addressed through doctor-patient counselling to reassure, just because it’s a low percent chance, you’re not out of the woods

• this is supplementary rather than a replacement as part of the overall communications

Clarifying purpose and timing

• Is this a tool to find out if you have kidney problems? Not because you already had them and you’re monitoring?

• So it’s not necessarily a tool that’s used after you have already been through a few years of it?

How different variables influence risk score

• Some questions about some of the metrics, it’s not clear if a change in proteinuria of 1.5 to 1.6 affects the potential number that I get scored at by a factor of 1 or 10 or 100. So the rating or the impact of the variations in values, is age increase by one year going to increase my risk by 10%, or does age increase by one year a very insignificant factor. So the ranking or the weighting of the individual metrics themselves would make it easier to better interpret the actual score

• What is the scientific background, the interpretation of these numbers? What is the behind the scenes calculations? I would like to know a little bit more about how they came up with all this information, more than just a percentage

• Some of the other metrics that I don’t think I have any control over are the MBST scores. Your biopsy results are created as a result of your test. I personally don’t ever want to have to go through that again. So I’ve repeating the biopsy to get a MEST score, no thank you; unless absolutely necessary and it’s a pretty high risk procedure anyway. So I don’t think I can change the outcome by asking for more biopsies, I actually make it worse. But the things I can do something about or changing my immunosuppressant medication levels, changing my diet, changing my coffee consumption or my alcohol consumption, whatever it takes

Report score as a category

• if it’s over a certain percentage, it’s flagged as very high rather than trying to grade between 50 and 99 or 100

• a translation table of what the different percentage ranges means to me directly. So a score of 0–5%, a score of 5–15%, a score of 15–25 indicates renal failure within one year, five years, ten years would be a better indicator for me than a number. So a correlation table of what this percentage could mean to me with respect to a need for renal replacement therapy.

• I’m thinking of a green, yellow. If you’ve had lab work done. on a lab work result, you’ll get a green, yellow, red bar and it indicates you know if you’re in the yellow area that’s a sort of timeframe

Report multiple scenarios based on differing variables

• If my predication is 10-perecent with a five year forecast; is my prediction going to be 2% of the one year forecast? Is it linear or is it? So I’d like to know. I don’t want to know five years from now. I want to know 12 months from now is my decline immediate or is my decline longer term?

• Can you play with numbers maybe? Have it like the loan thing where you’re trying to figure out your monthly payments, and you want a $500 amount payment. One year I get this, at two years I get this, at four years I get this.

Report individual data in comparison with population

• Some kind of a scale to know where you’re at with that number

• Is there any way of knowing the rest of the population as a comparison?

• knowing some statistics about people in my situation and my age with these scores. For a patient who looks like me, what is the likelihood that this treatment plan will be successful?

Other related desired information

Which factors influence disease even minimally that they could control

• I had asked to see a dietician and then saw a naturopath as well, just to understand some other things that could help. If you know some of the things that we consume and some of the things that we shouldn’t be consuming. I don’t think what was communicated enough, I had to actually get the information

• overall fitness I think was one of the suggestions about how I might be able to prolong but I don’t think I was given a whole lot of indicators of what can I do? What can I actually have an effect on? Is it nutrition? Is it weight? Is it exercise?

• what else should we measure or what other factors that aren’t being taken into consideration with the tool today, could be that might be useful. So lifestyle choices I think is an indicator of prognosis if you have good or poor lifestyle choices and again, whether your obesity is a factor. It doesn’t appear to be anywhere in the metrics gathered. Is a patient who is extremely obese at a greater risk than somebody’s who weighs less? But if there’s an indicator that obesity is being taken into consideration, I think that might be something that at least would give patients an opportunity to say there’s something I can try and do something about. Even if it’s not a 100% on the weight scale [for the risk score], maybe it’s only a 1% or 2% impact, but it’s something the patient could use. So that would be another measure that I would think should be something to consider

Informational/educational material

• A huge part of it is education for the patient and actually trying to be able to understand what it is that they’re telling you. Because for some reason you start talking about creatinine and all these other values that you really don’t have a clue what they’re talking about and it’s very difficult to make any kind of decisions. Gauging the comprehension levels of the patient is very difficult for the physician in a 20-min consultation to actually determine if I understand what he’s telling me

• when you first get your diagnosis you really don’t know anything about it. So the first thing you do, you try to look it up. And when you try to look it up, most of the websites are just like way over your head at first, right? Because you don’t understand what this means, what this number means or whatever, you’re just inundated. So if they had like a simplified, okay this is what this means like in laymen terms about all the aspects, really accessible … info, like on the website or something like that? It probably be a lot easier on someone