Table 3 Benefits and limitations of collecting RA outcome measures and using the RA PRO dashboard as per the Ecological Model of Health—Interview quotes
Levels | Themes | Subtheme | Quotes |
Patient | Self-Awareness | Knowledge of RA disease and status [Facilitator] | Q1.1. "Track progression of the disease and symptoms over time, which is helpful since a lot of the times I forget how it's been going for longer than six months ago. I've sort of forgotten how things have been progressing. More of a historical view across my symptoms and overall disease as a whole is interesting to look at." (P630) |
Knowledge about usability of RA outcome measures [Facilitator and Barrier] | Q1.2. "I never talked with my rheumatologist before about those scores. I could see them sometimes in my notes, but it didn’t mean anything to me, so it was more interesting. The dashboard made a conversation happen like, 'How is that calculated? What data are going into that to calculate a CDAI score?'” (P186) | ||
Q1.3. "I don't know what PROMIS is. I'm not quite sure what that's based on. I know that I answer some questions at the beginning of the appointment about how I'm functioning, but I'm not sure how that translates to this graph." (P574) | |||
Visualization of Disease Trajectory | Motivation [Facilitator] | Q1.4 . "It gave me hope that, although I'm not there yet, I'm much better than a year and a half ago. And that's very important. That really empowered me to feel like, oh, we're taking actions. And, visually, there's proof that we're heading towards recovery." (P437) | |
Distress [Barrier] | Q1.5. "To be honest, I would say I probably walked out of there more depressed. Because it’s one thing to have sort of a narrative that you’re getting worse. It’s certainly something else to see...where you’re getting worse. And, I mean, yes, I absolutely appreciate the information. I’m not saying I don’t want to see it... But it’s definitely, 'Oh, gee, this is even worse than I thought.'" (P225) | ||
Perceived Reliability of RA Outcome Questionnaires | Accuracy of scales [Barrier] | Q1.6. "They give you zero to 100, I remember, just one line... you have no room to measure. You're just eyeballing. Maybe today my mood feels like I'm okay. Maybe I'll do a little bit close to zero. Maybe I'm not feeling good. Maybe I do it in the middle. With that line, I just don't think it's accurate at all, to me." (P715) | |
Subjectivity of responses [Barrier] | Q1.7. "It's self-reported, right? So, what are your symptoms? And so, I'd say these are the symptoms. And, you know, it's zero to 100 or zero to whatever. And that's pretty subjective from a human point of view." (P370) | ||
Relevancy of questions [Barrier] | Q1.8. "The PROMIS physical function score, that’s based on your answers to questions. And I found some of the questions slightly ambiguous. ‘Could you work physical labor eight hours a day?’ I don’t know what they mean by physical labor. I can do what you are doing right now eight hours a day easy. But could I carry bricks eight hours a day?" (P799) | ||
Interpersonal | Patient-Clinician Communication | Understanding clinician’s perception of disease [Facilitator] | Q2.1. "And then he uses the dashboard in my meeting with him. You know, we go over it, and he says, ‘You know, I think you think you're a two, but I think you're really a five.’ [chuckles] You know, as far as pain goes." (P448) |
Discussion of RA PRO dashboard [Facilitator and Barrier] | Q2.2. "They're considering your pain control, your medication, your inflammation, your bloodwork. While I have an understanding of my bloodwork and what that all means, I'm not a scientist. Dr. [Physician’s name] is my rheumatology data guy. I need people on my team to fill in the gaps for things that I don't have education in or understanding of – not a thorough understanding." (P164) | ||
Q2.3. "The doctor didn't really go over it with me.... I wonder why she hasn't shared with me...It's my data." (P802) | |||
Discussion of new topics [Facilitator] | Q2.4. "What I remember her always talking to me about is if I'm in remission or not, because I have small flares, and because of my job and because I overdo it. Or I don't sleep, or I eat too much inflammatory–sugar or whatever." (P471) | ||
Redundant information [Barrier] | Q2.5. "I don't think it added any information to what I always get at his visits... I didn't really get anything from the dashboard that I don't already get from him." (P679) | ||
Patient Involvement in Care | Recall of symptoms [Facilitator] | Q2.6. "I like to be able to see, you know, am I doing better in one area than I was? Maybe I have a high activity because I've been stressed, and I have to remember to relax or to exercise." (P574) | |
Influencing honesty [Facilitator] | Q2.7. "I'm also learning to be more honest about it, to be truthful, because I don't want to be so honest about how much pain I'm in, [chuckles] because then it acknowledges the pain." (P448) | ||
Goal setting [Facilitator] | Q2.8. "For me to make a determination whether to change a medication, I need to know: What does my future look like? What are the risks? How have I been doing on this medication for a period of time? The dashboard's helping me figure that out as well." (P172) | ||
Focus of Consultation | Structuring visits [Facilitator] | Q2.9. "It gave us a focus. Sometimes we'll go off on tangents that might not necessarily be productive for my health discussion. The dashboard keeps it on target." (P471) | |
Clinician | Supportive Screening Tool | Consistent monitoring [Facilitator] | Q3.1. "I get better treatment because she is able to access... the information is right in front of her… I think it's more beneficial for the doctor as far as her being able to recall things, you know, testing and things like that." (P118) |
Work Efficiency | Faster access to patient data [Facilitator] | Q3.2. "It is a great tool for the doctor, and I get the benefits of the application because the doctor has faster access to the information." (P118) | |
Clinic | Quality of Care | Trust in the division [Facilitator] | Q4.1. "It showed professionalism and gave me more confidence in the division, you know, that they're capturing data. They're looking at the data in the right way. There's continuity." (P437) |
RA Outcome Measures Workflow | Inconsistent collection of RA outcome measures [Barrier] | Q4.2. "So, I mean, I would think that if there was a way to consistently do that each time, that would probably be good." (P715) | |
Communication of RA outcome measures by Mas [Barrier] | Q4.3."There's no discussion in advance with what's in the form. Occasionally, I will also be asked to fill out a form upon arrival at the clinic, and there's usually not much discussion about that either." (P197) |