Table 3 Verbatim quotes, listed according to categories of the coding scheme

Utility from clinicians’ point of view

Overall impression

Q1

You really managed to write down all important questions an asthmatic could possibly have. I don’t think that anything is missing. I’ve read the questionnaire a couple of times and I can’t think of anything that should be added straightaway.

Medical assistant, pulmonary rehabilitation (female, 30 years in patient care)

Physician-patient-communication

Q2

Well, there’s something positive about it. You can take this questionnaire and you can give it to the patients in the waiting room and then you can have a glance at it, and they can tell you: Yes, I would like to have this or that. And this is really helpful for us as physicians because we know that we have to pay special attention to certain aspects.

General practitioner (male, 32 years in patient care)

Q3

What I really like is that you can use the questionnaire to address special issues in weekly ward rounds and you can effectively address the patient and go into more depth there, or you can adapt training programs accordingly. That’s certainly a good thing. This doesn’t yet exist in this form. […] And there are also many questions, and it’s indeed the case that the range is definitely very individual, which is why I generally like questionnaires for addressing special needs, because it facilitates ward rounds as well, since you can specifically address the issues.

Pneumologist, pulmonary rehabilitation (male, 18 years in patient care)

Q4

And they all have completely different characters. There are some patients who do ask questions, and they get their information, but more than 50% of the patients listen to everything you say, then they leave and they feel like: Oh, actually I also wanted to ask this or that and how, so that doesn’t really help me now after all.

Pneumologist, pulmonary rehabilitation, (male, 18 years in patient care)

Q5

When there is someone who is an expert on his disease, well I obviously know what kind of person they are just because of the treatment. Well, yes, I know whether it’s rather easy for them. […] I know whether they see the disease as a challenge. I know whether they have psychosocial circumstances, whether they panic or whether they’re afraid of their next asthma attack. I know whether they are usually in the self-help group. […] But with some people, well, you have to drag every word out of them. […] And then I’m like: Oh well, he won’t come regularly. I don’t even know, if he regularly takes his medicaments or how he takes them. Somehow, he’s just hopping from one physician to the next. So, in such difficult cases, I might use it and I would say: […] The outcome isn’t really okay. Now, we have to get together. What are your expectations? What do you wish for? To challenge them a little bit, I would say, and to tell them: Look, here’s the thing. We’re ready to do something, yes, we want to respond to your wishes. But then, we have to agree on a goal.

General practitioner (male)

Q6

In order to really meet the patients where they actually stand. To have this written down as well, so that you can in fact see afterwards, after a year or maybe after one and a half years depending on their wishes in the first questionnaire / to realize this, to be able to really address their requests and to find out: Were we able to manage all of this? Or has the need simply changed as well?

Medical assistant, pneumological practice (female, 10 years in patient care)

Q7

Well, I’d say you could basically use it as a quality check. So that the patient receives it at the beginning of his pulmonary rehabilitation but also again at the end of it. To simply compare what he has wished for, you know? What was basically important for him to know, to learn, and was it possible to implement that in the time?

Medical assistant, pneumological practice (female, 19 years in patient care)

Q8

I would also like to see these questionnaires in disease management, for example, to identify patients who still need, let’s say, very specific information. So that we and also general practitioners feel like, oh wait, my patient seems to have quite a lot of questions left, I might introduce him to a pneumologist, or I’ll conduct a training program. The number of patients with respiratory diseases in the disease management program is the lowest compared to all management programs. And this already shows that there is indeed a supply gap, and the percentage of people who are also seen pneumologically is extremely low. And I can imagine that such a questionnaire could also be used in such a management program, […] so that you can see which patients can beneficially be presented by their general practitioner. Maybe in combination with the questionnaire to be able to immediately say, here, you can do something about that.

Pneumologist, pneumological practice (male, 35 years in patient care)

Q9

Because I think it’s really important for a patient to know well about their disease. And it’s often the case that it’s quite a new situation for them, I would say it’s routine for the physician and for the assistants after all. And I think it’s not unusual that you forget to explain certain things or what seems normal for us, I suppose, what we know already, and the patient would actually like to get more information. So that these things just don’t get lost.

Medical assistant, pneumological practice (19 years in patient care)

Implementation

Setting

Q10

Because it’s more specific and because I might feel like my pulmonologist is up to date in his special field, possibly in a different way than my general practitioner might be.

Patient (female, 53 years, 28 years since diagnosis)

Q11

I would say there are few general practitioners who know so much about it that they are in the right position for it. I mean, I wouldn’t go to the dentist with a surgical issue either, for example.

Patient (female, 61 years, 31 years since diagnosis)

Q12

Pneumologists would benefit more from such a survey, compared to general practitioners who have many other problems, diabetics and so on and so on, you know.

Pneumologist, pneumological practice (male, 30 years)

Q13

He is the wrong contact person. I think, he is a difficult contact person for an asthmatic because he covers a completely different supply area. He lacks specific knowledge. […] And no offense, but therapies have completely changed over the past ten years. They have become more specific, and you can’t overlook all of that as a general practitioner. Well, and they often use therapies that should actually only be applied in case of an emergency, I would argue, be it Diophylline or oral cortisone, and some general practitioners in fact prescribe it even for a longer time and sometimes with side effects in long-term therapy.

Pneumologist, pulmonary rehabilitation (male, 18 years in patient care)

Q14

Pneumologists know exactly what they have to do. I mean, that’s what they’re doing every day, right? General practitioners not so much, I mean, some education for general practitioners would be nice, wouldn’t it? My general practitioner has also often prescribed the wrong asthma inhaler to me. I told him about the exact side effects I was having, and he prescribed a different one. But it had the same components in it.

Patient (female, 65 years, 11 years since diagnosis)

Q15

You said that they had been used in pulmonary rehabilitation clinics before. Well, in a rehab clinic, they have, I don’t know, twenty patients in their ward and they stay there for three weeks. This is a completely different setting obviously. If I want to use such a questionnaire there, I have basically three weeks to complete it during daily visits. I have twice as many patients here every day sometimes and I have to guide them through somehow, but there are new patients every day. […] I’d say we all want to do our best for the patients, the established pneumologists as well. The problem with such a questionnaire is that it often causes additional work and that the patients might think: “Oh, they can make more demands and the physician needs to have more than ten minutes for me now.” […] If an average routine patient starts thinking about it because of a questionnaire like this: “Oh, yes, I’d like to know what my medicament can also do and what it can’t do. Or what do I have to pay attention to?” We can’t manage that anymore.

Pneumologist, pneumological practice (male, 25 years in patient care)

Q16

So about six minutes I have per patient.

Pneumologist, pneumological practice (female)

Q17

Well, I have to be honest and say that with asthma, I can already see that the most important thing is actually the therapy. […] I think that medication is clearly in the focus of attention in order to treat the patient.

General practioner (female, 21 years in patient care)

Q18

I can only emphasize that we do work a lot with the patients in our rehab. We educate a lot, we instruct them, and I can only support something like that, I think it’s just great. […] And as I said, the patients’need in the outpatient sector, they really are in need sometimes, […] the pneumologists just don’t have enough time for that.

Medical assistant, pulmonary rehabilitation (female, 11 years in patient care)

Q19

This fits to the feeling I have sometimes, that the pneumologists have actually withdrawn from the outpatient program a bit more and that they do less simply because of the so-called factor of time pressure. But this is in fact the part that is most useful in the end. And like I said, well, an ambulant patient program, you know? Like I said, the pneumologist doesn’t have to do it himself, it can be delegated or at least a great part of it. And well, I do think that it’s their duty in a way in the outpatient sector. And we as a pulmonary rehabilitation clinic, we have these educational measures, training programs and so on, that’s a focus. But just think about how many times a patient comes here […] and how often do they see their pneumologist? Clearly, the focus on generating knowledge and practical handling is in the outpatient section, isn’t it? Especially in the repetition, especially in the starting situation, when it’s newly prescribed.

Pneumologist, pulmonary rehabilitation (male, 32 years in patient care)

Q20

Actually, the time requirement naturally comes with the disease with these patients. You can’t just work it off in five minutes. So you should actually expect the physician to take enough time for it.

General practitioner (32 years in patient care)

Q21

If we had this information before the training program, it would be a different setting. Then, you can prepare yourself a bit and say: ‘Oh gosh, quite a lot of people had these issues now.’ And you can really process it in the training. […] It would be a cause for thought for the patients, before the training as well, when they have the opportunity to ask their questions or to tell us what to do in advance. I think it would be really helpful in this case (Note: This refers to the DMPs).

Pneumologist, pneumological practice (male, 25 years in patient care)

Q22

I think the best way to reach most people who are also sensitized for the topic and who would have time to fill it out is during pulmonary rehabilitation or at the lung specialist.

Patient (female, 53 years old, 18 years since diagnosis)

Q23

So that they, yes that there is a forum with eight or ten people, three hours with a respiratory therapist, three hours with a physician and you are in a small group where you can open up, and important questions are in fact asked if they really burn on the heart, on the liver or wheresoever, on the lungs (Note: This refers to the DMPs).

Pneumologist, pneumological practice (male, 35 years in patient care)

Q24

Well, let’s put it that way, such a questionnaire probably wouldn’t have a great influence on the course of pulmonary rehabilitation, because, like I said, many questions that are asked here are already covered by the standards, you know? Breathing techniques for example, as well. Or what you have to do in case of an acute asthma attack. These are exactly the parts that are dealt with in the asthma training program, precisely.

Pneumologist, pulmonary rehabilitation (male, 32 years in patient care)

Q25

Well, yes and I think education is really, really important. What kind of disease is it? I can’t cure it or get rid of it. I can treat it symptomatically and I as a patient have to keep up. And you need to be reminded of that from the beginning onwards, again and again I would say, because everyone stops taking their medicaments as soon as they’re feeling better. Or they don’t go to their pneumologist regularly and they think: Well, it’s fine. Until it’s getting worse, and then you have to start all over again. You could actually avoid that.

Patient (female, 53 years, 28 years since diagnosis)

Q26

I have only been to rehab, once. […] I don’t know if it meets the standard or if this is always the case no matter where you are. Or if that’s different in other clinics. But I know that we had a meeting with, let’s say, twenty or thirty people in a lecture room. I’m sure not everyone would have liked to talk about the questionnaire in front of the assembled company.

Patient (male, 58 years old, 8 years since diagnosis)

Time of first deployment

Q27

I wouldn’t use it after initial contact, there are too many open questions at this point, I would say it’s too specific and these questions address patients with a diagnosis who already have an established therapy and who know how it’s done. And I’d say the earliest point is after the second or third appointment after an allergy test, after a pulmonary function test and so on. The earliest time would be as soon as you say, I think we got the right adjustment now

Pneumlogist, pneumological practice (male, 35 years in patient care)

Q28

I’d actually give it immediately at the initial consultation, so as soon as you get the diagnosis, because there are certain things that you might not be told right away like breathing techniques and so on. And then, you can give feedback to the physician and tell him where you still have needs. Things you might not have understood at once, because you don’t/ so, I’d say it shouldn’t be filled out immediately by the patient. I’d give it to the person who has just been diagnosed, as a kind of guidance.

Patient (female, 34 years, 23 years since diagnosis)

Frequency

Q29

So just that patients, for example, realize once again: Do I actually know about everything, or have I forgotten some bits and pieces yet? Or has anything changed, for example personal environment? That definitely makes sense.

Patient (male, 53 years, 31 years since asthma diagnosis)

Q30

New patients who come to the practice for the first time, maybe. I think this could be quite interesting. So that you get some kind of overview. What do they know already or what questions do they have? And they could also be invited to the training as well. That would be my idea, at the beginning, at first contact. That you just staple it to the medical history. So, if they already have a diagnosis of asthma or something like that, I would do it with the anamnesis right away, to simply know about the present situation.

Medical assistant, pneumological practice (female, 17 years in patient care)

Responsible contact person

Q31

Well, I would mainly trust the physician, I’d say, at least at the beginning. This would be different once I feel a bit securer, for example now. Then, I can also talk to other people. […] But you feel very insecure, especially at the beginning.

Patient (female, 44 years, 8 years since diagnosis)

Q32

I personally think that there is usually a good relationship of trust with the practice team. If they are trained, if they are able to provide helpful information, then I think it’s quite useful.

Patient (female, 61 years, 31 years since diagnosis)

Q33

… that we employ pneumological assistants who question and examine patients especially in the disease management program as well. And this would be on a different level, it wouldn’t be patient and physician, which is often not a balanced conversation, but rather patient and pneumological assistant, and sometimes, […] different needs are expressed, something that wouldn’t necessarily happen in conversation with the physician.

Pneumologist, outpatient practice (male, 25 years in patient care)

Q34

Many patients came to us and asked questions, especially the questions that are on the questionnaire, they asked me or us as medical assistants. I think it’s easier to ask us than to ask the physician, it’s less restrained. And it’s often the case that some questions come up while we take care of the patient, when we take an ECG or blood samples. And it’s always nice when they casually mention, oh, I have another question. Indeed. And the patients are very grateful when we provide them with information.

Medical assistant, general practice (female, 45 years in patient care)

Q35

I try to put myself in my trainees’ place. But no, my trainee would also be able to answer every question, they’d know the answers.

Medical assistant, general practice (female, 45 years in patient care)

Q36

It’s interdisciplinary after all. A physiotherapist must do that, they practice breathing techniques with them, our care department practices self-monitoring via peak-flow-meter with them, the handling of the asthma inhaler, the care section practices this. Of course, other occupational groups have to be included, as well. At least in the area of pulmonary rehabilitation. Right? That’s our goal after all.

Pneumologist, pulmonary rehabilitation (male, 32 years in patient care)

Q37

Yes, but we as physician assistants, for example, we notice it again and again: The physician does ward rounds, or the assistant medical director, whoever, and they definitely tend to explain everything in their technical, medical jargon, and the patients are always like, they are merely nodding through, yes, got it, yes, and as soon as the physician is gone and they meet us again later, they’re asking us: “I didn’t really understand what the physician has just said.” Then, we often explain everything in more detail again so that the patient can also understand it, yes.

Physician assistant, pulmonary rehabilitation (female, 11 years in patient care)

Barriers

Q38

From my experience it’s instantly dismissed sometimes, with a certain hand gesture, you know? Like, no, it can’t be like that. And then you somehow seem to be the stupid one.

Patient (female, 64 years old, 10 years since diagnosis)

Q39

What do you do when there is always the need for more consultation? But you know that you won’t have more than ten minutes the next time. I think that’s always difficult.

Pneumologist, outpatient practice (male, 25 years in patient care)

Q40

I mean, the last question really kills any pneumologist in an outpatient practice. “Would you like your physician to make more time for you in case of special requests?” This is, well almost everyone will tick “yes” there or at least most of the patients will say “yes”. I mean, […] we regularly have four patients per hour in our practice. My colleagues regularly see six people already and additionally the acute cases and everything else in between. And we might have some people who would say that it’s already fulfilled. But otherwise, well, what do you do when you see that there is always the need for more consultation? But you know that you won’t have more than ten minutes the next time.

Pneumologist, outpatient practice (male, 25 years in patient care)

Q41

Questionnaires usually end up in a drawer and aren’t really used in the daily routine.

General practitioner (male, 24 years in patient care)

Q42

For example, when I ask one of my patients: “Do you need more information on the handling of the asthma inhaler?” And he says: “No, I know all that.” And then I have him demonstrate it and I see that he’s doing it all wrong, then there’s a significant bias in it.

Pneumologist, pulmonary rehabilitation (male, 18 years in patient care)

Q43

“Yes, yes, I’ve been doing that for twenty years.” That’s the typical answer you get and then you dig deeper, and you tell them: “Oh, why don’t you demonstrate how you do it?” And then you notice some serious mistakes in the application and that the medicament can’t really get to where it’s supposed to go.

Physician assistant, pulmonary rehabilitation (female, 11 years in patient care)

Discussion

Q44

I’ve had it for thirty years and every now and then, I’ve had some crucial experiences in my patient career where I have actually been informed, after years, how to take the asthma medication, for example. Or what do to when I can’t breathe well. […] And I was like: Okay, you could have explained that to me five years earlier, I would have felt better faster probably. That’s why I certainly know what you’re writing about, when it comes to these questions now.

Patient (male, 53 years, 31 years since asthma diagnosis)

Q45

So, it’s usually not the case that asthmatics complain about not having enough information or so. That’s indeed rather an exception. It’s more like we have to motivate asthmatics to come see us regularly, also when they are stable, that they still have to come see us once or twice a year and that they don’t just reorder their medication and that’s it.

Pneumologist, outpatient practice (male, 25 years in patient care)