Table 1 Themes from preliminary TOC discussions to decide on desired outcomes for the future model of rheumatology care
From: A theory of change for patient-initiated follow-up care in rheumatoid arthritis
Theme | Description |
|---|---|
Desired outcomes | |
Theme 1: Efficient and effective care delivered to patients when they needed it | Patients seen when they need to be seen “I’ve had so many appointments where my specialist just wanted to talk about sports and other things [they] enjoyed talking about. [They] didn’t need me there, so I would have been using up clinical resources unnecessarily.” (Patient 8) |
Maintaining low disease activity between visits “I could think everything is fine, and things could not be fine. Just because I think we do, for me personally, I mean, you tolerate a lot. What is an acceptable baseline? And then you inch off of that baseline that was acceptable and deteriorate a little bit, and your life is busy, and you’re working really hard, and you’’ve got all these priorities. It is very, I know for myself, I would be the last priority for saying to myself: I need to have a follow-up. I know that.” (Patient 1) | |
Safeguards built into new care delivery “To me, in a perfect world, if you want to do this, you get somebody else that’s working with this doctor. They’re both on your case.” (Patient 6) | |
Clear communication on how to access care “One of the issues that I’ve had [is] communication with my rheumatologist. [It] has been difficult. If I wanted to pick up the phone and call her, it’s a Herculean effort. It’s almost like they’re hiding [in] the rheumatology clinic sometimes. Phone numbers seem to change. If there were a text option for communication with someone in that office, I think that would be useful for me.” (Patient 2) | |
Patient needs met via education “[We need] opportunities for education” (Patient 9) “How do we find out about new medications that may be better for us?” (Patient 8) | |
Patient preferences for care considered “The doctor I had before, it’s like, shut up, sit down, I’m in charge. I’m the expert. I will tell you what to do. So respect [of my preferences] is crucial.” (Patient 6) | |
Theme 2: An improved model of rheumatology care for providers and clinics | Increased capacity and access “Having increased capacity for future patients, with potential reduced wait times” (HCP 7) |
Sustainable and scalable “The system for re-accessing care is not causing an overburden on clinic staff and on physicians” (HCP 6) “I would add scalable. That way, it’s not just our clinic, but smaller groups or bigger groups could implement whatever you come up with as well. (HCP 1)” | |
Physician satisfaction “I think we would all want a highly functioning clinic where we are having a collegial environment where people are communicating not just with the patients, clearly, but with each other” (HCP 19) | |
Patients empowered to be active partners in their care “We have limited resources of highly qualified professionals, and you want to just use those to your best capacity, so the clinics are always thinking about how the patients join in their care, how are they super engaged, knowledgeable, up to date about what to do next, what can they expect about the service they are going to get.” (HCP 12) | |