Patients characteristics

Mean age of interviewed patients was 44 (range: 22–65) years, see Table 1. 13/20 (65%) of patients were female. Patients reported diverse occupational and educational backgrounds. All patients had a suspected axSpA diagnosis. The interviews lasted between 8 and 33 min (mean 15.3, 25).

Table 1 Participant characteristicsCurrent challenges with traditional patient pathway

Long travelling distances and long waiting times at the clinic were described as burdensome and challenging to integrate into personal daily life.

“For me it is sixty kilometers. So, depending on where you have to go, it is of course a hassle.” (P 8, pos. 35)

“I mean, I have children, I’m employed. That’s already an enormous time expenditure, currently also with the search for a parking space. Then somehow registering again. And waiting times on site.” (P 20, pos. 37)

Patients pointed out to suffer for a long time and to experience high levels of psychological strain. Insecurities were often described, also due to bad previous medical experiences.

“So, you know, if you've been walking around with pain for five years or even longer, you're just glad for once that someone is there to take care of you. And also takes you seriously. Because these are diseases where you are not taken one hundred percent seriously by many doctors.” (P 17, pos. 39)

Patients reported that doctors have limited time, which might affect their quality of work and lead to medical errors.

“Everyone knows that when you're at the doctor's, everything always has to be done quickly. The doctors always don't have time, and they only listen to half of what you say. It's like that everywhere, no matter where you are.”(P 5, pos. 53)

The patients highlighted the new model of care as an option to reduce waiting times for their rheumatology appointment.

“That was actually quite good, because it meant I got an appointment relatively early. If I had registered normally, I think I would have had to wait a minimum of three months for an appointment.” (P 18, pos. 41–43)

Experiences with piloted pre-assessment-based patient pathway

Patients described long waiting times to receive their rheumatology appointment in the traditional patient pathway and welcomed the new care model offering faster appointments.

Patients were able to give a comprehensive description of the piloted patient pathway, including precise descriptions of all key components. As the interview progressed, each component was addressed, and the patients' perspectives were elicited.

Student-led clinics

Patients experienced the student-led clinics as high-quality and non-inferior to standard care. Participants commented more extensively on their experiences with the student than on the other components of the pre-assessment. Patients perceived the student-led clinics as an effective preceding supplement to the rheumatologist appointment. Patients described their experiences, which are shown in Table 2.

Table 2 Student-led clinics patient experiences

Patients could very well imagine student-led clinics as part of standard care.

“Yes, I can well imagine that in the future. As soon as it is standardized and also discussed afterwards with the doctor and perhaps prepared in advance so that the important questions and information are considered.” (P 12, pos. 45)

Patients also reported limitations. Information regarding treatment options were only addressed together with a rheumatologist.

“Well, okay, if you now assume that it's a patient like me, who has many, many questions, a student can't answer them, of course, so you have to wait until you actually go to the doctor.” (P 10, pos. 37)

Patients provided various suggestions to improve student-led clinics displayed in Table 3.

Table 3 Patient suggestions to improve student-led clinicsSymptom checkers

Overall, patients described the use of symptom checkers as a good way to prepare for the appointment and also to effectively bridge the waiting time.

“And you could also integrate that into the waiting time at the beginning. (…). It could take away some people's anxiety or help if one lacks the words or so.” (P 13, pos. 59)

The results of the symptom checkers provide initial information about the illness and enable patients to work on resources and exchange information with others during the initial diagnosis.

“And so you already have a rough idea of what it could be. I talked to a good friend of mine and with his mother. They both have rheumatism. And they could already tell me something about it from their experiences.” (P 14, pos. 103–107)

The personalized questions, simple handling, as well as ecological aspects (digital processing) were positively assessed.

“So, I think it's helpful. And it also replaces this complete paperwork, jumble, which is always built up like this - Paper, paper, paper, paper.” (P 7, pos. 55)

Some patients indicated that using symptom checkers has the potential to cause uncertainties and confusion among patients in regard to their diagnosis and symptoms.

“So if you enter your data as a layman without professional support resulting in various potential diseases, that's just like when you enter any symptoms on Google. I think this is rather counterproductive without having a doctor next to you. Well, you hang a bit in the air and you start thinking, well, do I have that or is it that or not or? So that's actually rather unsettling and confusing, I think.” (P 18, pos. 73–79)

In addition, some patients experienced difficulties to complete the symptom checkers:

“So often it's two, three things that you could tick. Sometimes what you are missing or how you experience something is not easy to describe, especially if you can only tick something.” (P 17, Pos. 17)

Disease activity monitoring app

Overall, the patients reported high usability in terms of simplicity, comprehensibility, and flexibility of the app. Above all, the continuous documentation of symptoms over time was positively highlighted. Some patients also perceived the app to be useful to prepare for the next doctor’s appointment.

“I also found it quite good with the app that you documented this over a long period of time and not always just in a period from doctor's visit to doctor's visit, but also kept track of the time in between.” (P 16, pos. 43)

“Well, I definitely use the app. If I have appointments and there are months in between, then of course they want to know how things have improved or deteriorated in the last three or four months. Of course, I don't know anymore, and with this app, I think it's actually quite good.” (P 19, pos. 30)

Patients appreciated the reminder function of the app and suggested more adaptive reminder intervals. Furthermore, a comment function, as well as a documentation option for medication intake and a help button were mentioned as useful additions.

“So what bothers me a bit is that the interval is always periodic. So maybe you could make it more intelligent, that it is somehow evaluated, that if I just enter the same thing five weeks in a row, that then somehow the interval is maybe reduced a bit, that it then only comes once a month or so. So that would be, I think, already helpful.” (P 15, pos. 51)

“It worked great. Except for two questions, I didn't know exactly (…) who they meant and what time they meant. And then I didn't have a help button where I could somehow get another explanation: okay, in the question this and this and this and this is meant.” (P 13, pos. 55)

“But I would sometimes like to be able to set my own settings for such apps and say: okay, I can enter my state of health there every evening if I want to. For example, did I also take painkillers? I would also miss that now. Because, for example, I only take one Ibuprofen at a time, nothing more, nothing at all. But I don't know anymore: when was it so severe that I decided to take an Ibuprofen (NSAID), for example?” (P 13, pos. 67–69)

Patients did not notice any immediate changes in their rheumatology care as a result of using the app, yet it provided them with a sense of security.

“So the care is now not yet changed by the app. I do not feel medically cared for by it. I rather feel, which is perhaps more of a point, that I feel somehow in good hands. Definitely! I think to myself: Okay, someone is now (laughs) consciously looking at it. And I am now in good hands. And everything is checked once comprehensively.” (P 20, pos. 25)

Capillary self-sampling

Most patients described the independent collection of capillary blood as quick, easy and painless. The instructions were perceived as clear. Potential savings of travel and time were most frequently mentioned in terms of benefits. Furthermore, it was mentioned that patients do not need a referral under these conditions and that many services related to blood collection are also eliminated (staff, storage, pick-up service to the laboratory). Interviewees also perceived capillary blood collection at home as easy and enjoyed the optimal conditions at home (quiet, familiar environment).

“So it's awesome in terms of time, because it doesn't take a lot of time. As I said, you put on the cuff, take the device, hit it, poof, fill the cannula, off to the box, off to the post office and goodbye. Brilliant. That's absolutely brilliant. Well, that's what I would wish for, that it comes onto the market, because it's absolutely a super highlight, a super gadget, really. I think that's really awesome. So, someone really thought about it.” (P 11, pos. 54–56)

Other patients described challenges that they were personally unable to do the capillary self-sampling on their own, so they took the kit to the family doctor or had relatives help them.

“I was a little nervous, I must admit. But as I said, and then really amazed, because it was so easy.” (P 12, pos. 23)

While other patients described challenges.

“I didn't make it. That's why I went to my family doctor and he did it. And the doctor's assistant also said that we couldn't do it alone and I don't know, maybe that was somehow difficult for us.” (P 9, pos. 73–77)

“It's just funny, a funny situation. Well, we did it together, my husband and I, he started and pressed the button. But if I didn't have a husband, I would have had to do it alone, right? It's just simple, the diabetics, they have to inject themselves regularly, they're more used to it. But for me it was very unusual. I didn't like that very much. Now in retrospect I have to laugh.” (P 6, pos. 97)

Some patients reported to end up with a scar after using the self-sampling device.

“The only thing I notice is that when you take a blood sample using the syringe blood, there is only a fine sting. You get a plaster on it and you don't even see it anymore. Now with the device, you're left with this kind of round ring, the size of a penny piece, it's pricked over such a large area. Or if you do it very often, then in principle you have rings like that, circles like that on your arm. (laughs) It's like a pattern band.” (P 7, pos. 19)

Furthermore, ecological aspects and costs were addressed critically:

“I was just thinking what a hassle and how expensive. I mean, I threw away all those materials, right? Well, you had to dispose of them, because they were all single-use materials. That's a bit of a shame, isn't it?” (P 4, pos. 17)

Patients were grateful for the extended time provided for student clinics.

“I had the feeling that there was a great time slot for me. The student took a lot of time for me. That has to be said so clearly. She showed me everything, even with the app, and how we did the questionnaires - there was never any time pressure or anything like it. So, that's already different than when a doctor drops by quickly and is gone again right away.” (P 5, pos. 53)

Patients felt that reducing visits and trips to the rheumatology office saved them time and money. The pre-assessment was easy to integrate in their daily lives.

“At first, I was sceptical because I have not experienced it that way before. When I go to the doctor, there was always a doctor to talk to. It was the first time for me that I spoke with a student who prepared the whole thing. I also thought that the combination with the app was quite good, that it was documented over a long period of time and not only in a period of time from doctor's visit to doctor's visit, but also the time in between was kept in mind.” (P 16, pos. 42–43)

“It saves me a trip to the doctor. It's definitely more helpful that way. Simply in terms of the whole process - for the medical staff and for the patients themselves. For example, I drive 25 kms every time I need to take a blood sample.” (P 17, pos. 79)

Potential benefits

The transferability of the new care model is reflected in everyday sustainability, time aspects such as reduced waiting time, general travel and time savings. With the student-led consultation hours, an early medical access with a generous time frame is created (Fig. 2).

Fig. 2

Benefits of the new care model from the patient’s perspective

Potential barriers

A number of patients indicated that smartphone possession, as well as technical knowledge, can be a barrier in the context of self-sampling and app usage (Fig. 3).

“I think that's only something for people who know how to use a smartphone or who are simply technically skilled. I could imagine that older people or someone who's just not that interested, I don't think they'd be able to handle it.” (P 8, pos. 37)

Fig. 3

Limitations of the new care model from the patient’s perspective

Patients suggested that the training for students and the effort involved in further teamwork could be a barrier.

“The problem is that it also means extra work for the doctor. For example - He has to communicate with the student about the patient. Maybe it's only a little extra work, but it's definitely extra work for the doctor.” (P 1, pos. 49)