Table 5 Sample patient interviewee quotes by topic

Characteristics of the user

Factors that influence decision to undergo surgery

Quality of life. Right now there’s just so many things I just can’t do that I normally do. The long-term effects of not having surgery versus surgery, that’s something else I consider. (Patient #11)

One of the worries for me would be the risks from the surgery itself, infection, paralysis, death. (Patient #16)

The complexity of what other organs [surgery] might affect, and for me, I define success as being able to have the pain gone, and not to get laid up in the bed (Patient #13)

You also want to make sure that you’re kind of going through the progression, exhausting some of those less invasive, more conservative options before doing something like surgery. (Patient #14)

Perceived utility

If I had something like this to look at it and somebody told me I had a 20% chance that my back was going to get better, then I would’ve said, “Wait a minute. This is crazy. I’m not doing this.“ (Patient #1)

In my case, there are unknowns, and if I’m able to define what my chances may be of achieving, some percentage of either disability or better outcomes, that’s a benefit and that would probably weigh in to my decision-making process. (Patient #2)

There’s probably a small section of people that say, “I don’t want to know. I don’t want to know. I don’t understand numbers.“ And with the graphs and everything, maybe I could see their point. (Patient #5)

It would save me and [the surgeon] time in making the diagnosis and making the decision, because you’ve already given us the facts pretty plain. (Patient #6)

I can see it being very helpful for those that are probably a little less interactive with their doctor or their surgeon. (Patient #10)

It would also talk me out of it if people weren’t getting any, if your reds and greens are reversed, then yes, it would talk me out of it and that’s the information I would like to have, that these people aren’t getting help.(Patient #15)

Sometimes those discussions [with the surgeon] lead to some uncertainty. I think this would help clear up some uncertainty that you might have after meeting with your surgeon. If you had this information in front of you. (Patient #14)

Clinical content

Quality and applicability of the calculator

I guess the question is, how this probability is truly calculated. For example, if you’re extremely depressed, does that automatically puts you more towards that only 30% improvement? It would also be helpful to understand, “Oh gosh, if I was less depressed, oh I could whatever, my result could be much better” (Patient #16)

It’d be helpful if there were other metrics. Like if you did PT for six months, you have this percentage chance of [improvement], or most people only improved 3% or whatever it is. (Patient #9)

Redundancy of information or completing extra questions

I don’t think it [filling out extra questions] such a big deal. The information there’d be very, very nice to have, I would think. (Patient #14)

Adding extra information after they’ve already done it two or three times [could be a barrier], but when you’re faced with something such as surgery, then you know, it’s a sort of a major deal and I like to have all the information in front of me I could have as far as probabilities and what would take place and what you can expect. (Patient #14)

I think a lot of this [willingness to complete extra questions] would be determined by how the patient is feeling and what kind of pain they’re in or what kind of discomfort they’re in or what their lifestyle is and what their age is. (Patient #12)

Workflow and Communication

Selecting who should complete the calculator

Presenting a calculator to me before the surgeon says, “Okay. I think you’re a candidate for surgery,“ is irrelevant. I don’t need this early in the encounter. I would need this when the surgeon says, “Okay. Look, you’re a good candidate for this surgery.“ (Patient #2)

Determining when to administer

I’m a person that likes to plan out and know best case, worst case scenarios. So the more information somebody can give me, even if I’m not at that step right now, like I’m not at a surgery step right now, but I would still like to know the probabilities of positive outcomes for people who do have surgery, 12 months out, five years out, 10 years out. I would love to have that information. (Patient #15)

I think the initial ask should be a little further out, before the visit, while you’re at home. It gives you time to think through it. You’re not rushed. (Patient #10)

Mode of administration

I would say that for me personally, getting the message or getting the survey through My Health is the best option for me. But of course, you have to have the cell and you have to have email and you have to be willing to open the email. (Patient #5)

Send it to me in an email. I can look at the questions at home. I can think about them. If you hand me a tablet in a waiting room, and now I’m thinking, “Hey, I’m trying to fill this out.“ Now the doctor will see you now when I’m halfway through or I’m just trying to fill it out quickly. For me, send it to me so I can sit down and I can give you all the correct information and not just go through the motions of checking a block someplace. (Patient #8)

For me, I’d rather just get a link or do it on my myHealth account, pretty much everything on my computer or tablet or my phone. (Patient #11)

If it’s me doing it, I get bored if I’m in a waiting room. So that’s like a perfect time to hand somebody an iPad. And if you give me something to do at home with the amount of work emails and cooking dinner, like I’ll never get to it. Like it’ll pop up on my phone and I’m just going to swipe it out of the way. But if I’m sitting somewhere and I’m captive and I have nothing to do, if you give me anything, I’m going to do it. (Patient #15)

Human Computer Interface

Communicating probabilities

They would need to put a disclaimer on it saying, “This is just average. These are just averages and your results may vary.“ (Patient #5)

Part of the dialogue should address that, “Here’s what we mean by 30% improvement.“ So, if you have a high level of pain right now, it’ll be fairly significant at a 30% improvement.“ What is improvement, what is the definition of “improvement” versus “30% improvement”? (Patient #10)

So the thing they need to realize is that these are just averages. Because that’s my thing, if a patient comes in and you tell them, “Well, there’s a 75%,“ they will lock onto that 75% and they are that 75% that’s going to improve. They don’t see the 25% that doesn’t improve. So as a physician or a provider, I would show them this, but I would also like, “These are averages, these aren’t guaranteed. Just always keep that in mind (Patient #15)

Description of key terms

If you have it where you could click on a description [of a key term], then that’s another way. Click here for more information on how to answer this question. Some people are going to take the time to read that and understand it and think about it, and others are just going to blow through and not read those. (Patient #11)

A lot of those questions are very specific and easy to answer, but some, arm or shoulder numbness, “Well, do I have numbness just because it tingles some of the time? Do I have it at the moment,“ which often is how they’re asking it. That would be a simple answer. You need to be a little more [specific]. (Patient #16)

Help me understand what moderate disability is or severe or exaggerated symptoms,“ things of that nature. (Patient #2)

External Rules, Regulations, and Pressures

Issues regarding payment

No, I don’t see how it could be any harm at all. Not to me, I don’t see anything that would be harmful for it at all. (Patient #1)

I think insurance companies would not do that [use it to deny coverage], nor doctors (Patient #7)

You may have this mismatch where a patient may say, well, I’m willing to undergo that surgery, even though I was only a 5 or 10% chance because I’m in such pain, whereas a healthcare provider, a surgeon, or even an insurance company may say, well, we’re not going to do this because the probability is so low. (Patient #9)

Issues regarding liability

You’ve got to put your legal hat on and go, “They told me that I had a whatever percent chance.“ You’ve got to put all your disclaimers and all of that kind of stuff. Unfortunately, we live in that kind of a world today where people sue everybody for everything. But I would think the vast majority of people would appreciate something like this. (Patient #11)

System Measurement and Monitoring

How to measure success

“Were you treated right? Do you feel that the course of treatment is resolving your problem? Is your problem resolved?“ (Patient #5)

Was the calculator helpful in making your determination to have surgery? I think any surgery patients should have be asked that question in their post survey, to know whether they thought it was a helpful tool. (Patient #9)