Patient and public involvement

The research question was triggered by observations of German general practitioners who reported difficult encounters with asymptomatic patients with CAD and their demands for invasive rather than non-invasive testing. To better include patients’ views in the interview guide, the interviewing researcher attended a coronary catheterisation laboratory for 1 day where she was given the opportunity to talk to patients before and after their procedures. Beyond this, patients were not involved in the development of the research question or the study design, but were recruited as participants. During the interviews, patients actively took part in the study. Patient representatives will be informed about the study results and asked to support dissemination.

Analysis

The analysis was carried out in different stages following the methodological approach of a content analysis by Mayring12: the interviews were recorded and transcribed in full. Following anonymisation, the language material was reduced by determining evaluation units and by categorising subject areas. Each subject area represented a substantial meaning of the statements made by the patients at a higher abstraction level. The meaning of the statements, but not the frequency of occurrences, was a criterion for the categorisation. Each evaluation unit was encoded by two independent evaluators: the interviewer (AH) and a general physician affiliated with the research team of the institute (DD). The computer program atlas.ti (V.7 and V.8) was used for the analysis. The results of the analysis by the two evaluators were compared with one another and were then used to improve the categorisation systems and coding guides. The final version is detailed in online supplementary appendix 1 . After that, the first evaluator reanalysed the entire material using the final version of the categorisation. A 10% random sample of the coded material was reviewed by the second evaluator to ensure coding quality (see online supplementary appendix 1 for details). To further differentiate factors fostering CC within the specifics of the German healthcare system, we reanalysed quotations of aspect 2 (CC intervention) after scientific reviewer comments.

Unquestioned acceptance of prescheduled appointments for procedures/convenience

Patients reported follow-up appointments for the next CC which were already scheduled and communicated in the medical report after their last CC. This is an interesting observation, as it shows the interplay of a healthcare system factor (hospitals schedule these appointments automatically) and patients’ uncritical acceptance. However, many patients were glad to accept the appointments without questioning the need for another CC, as it meant that they did not have to arrange an appointment themselves:

I can’t possibly list all of them [the CCs]. Nine, maybe I’ve had nine or ten, and another one for my leg. […] Those were all carried out as check-ups and not because something happened […]. I always asked for a copy of my medical report at the hospital. […] Two or three days before the appointment I would call them and ask: ‘Is the appointment still scheduled?’ and they would say ‘Yes, it is’. And then I said: ‘Then I will be there.’ I always went to the appointments scheduled in the medical report. […] I never went because of actual complaints. (patient_6)

It appears that patient_6 wanted to be a ‘model patient’ and wanted to keep the appointment given to him by accepting his physician’s advice unquestioned. The fact that he went to the follow-up appointment without actually having any complaints shows that there is a misconception about the need for CC. Below, patient_2 decided for himself that he really needed the appointment, not based on a medical requirement but rather on his own beliefs, although some subtle doubt remained:

When I got the medical report, the new appointment was already in it. They just scheduled it. (Reads out loud.) ‘Presuming you agree, we have scheduled an appointment for 18/03/2005.’ That was the report from the 8th of April and then I was directly//A new appointment was//Well, basically I was fine with all that, because it meant that I did not need to make an appointment myself. I kept telling myself that the appointment was essential and that I should just have it. (patient_2)

Similar to patient_2, another patient said that agreeing to have an intervention without knowing if there was really a need for it was as a matter of convenience, because it would have taken him some time to get an appointment with a cardiologist:

He [the physician] said that it would be better to have a closer look at it [an abnormal ECG]. If I go to the cardiologist, I have to wait a year before I can get an appointment. […] So I said […]: I’ll just have another cardiac catheterization, because, let’s be honest, it’s much faster. I got an appointment within 14 days and then I had the procedure. (patient_23)

Helplessness in situations with varying opinions on the required level of care

Patients reported differences in recommendations between hospitals and primary care physicians. One patient described experiencing a conflict between trusting the professional competence of his primary care physician and the hospital physicians, who encouraged him to undergo recatheterisation for follow-up purposes. The patient appeared to be well informed about CC, talked about risks that are associated with CC and said that non-invasive procedures may have been just as effective in diagnosing anomalies. The following quote demonstrates his helplessness about whose advice to follow and how to make the right decision:

Half a year later they sent me an invitation, in fact they had already told me before that I should go there again to have another cardiac catheterization just to make sure that everything was okay. I then talked to my primary care physician and she advised me against having another CC, because those kinds of anomalies can also be discovered in simple examinations like a stress ECG. And because cardiac catheterization is associated with certain risks. They also told me that in hospital, but I was unsure and decided to follow the hospital’s recommendation, because they said that they carried out the examination and would recommend having another catheterization based on the findings. I had a slightly better relationship to the hospital, because I had no idea about the subject matter and they had helped me in the past. Knowing what I know now, I may have decided differently, because I now visit my primary care physician for regular check-ups […]. Interviewer: Does that mean you had the cardiac catheterization in hospital […]. What did they find? (3): They didn’t find anything. Everything was fine. (patient_3)

Disinterest in and lack of disease-specific knowledge

Some patients did not ask questions about their health because of a lack of interest in the disease and treatment, as illustrated by patient_11, who had deliberately decided not to learn about his disease:

Interviewer: Do you try to get information on your disease, do you read up on it? Patient: Absolutely not! No! I don’t want to hear about illnesses. I just don’t want to know about that stuff. (patient_11)

Furthermore, patients showed their disinterest by not dealing with the details of the invasive procedure and by reacting indifferently and impassively to the intervention. This refusal to accept the role of a competent patient who acts as an informed decision-maker is also reflected by a lack of knowledge of the medical terminology used:

Patient: That stinnet or stint or whatever it is called. Interviewer: You mean a stent? Patient: I don’t remember things like that. I just don’t care! (patient_14)

Patients often reported that they did not ask about the treatments and did not question the decision for an invasive procedure, because

The other question is whether I understood everything. […] If they [the physicians] believe that it [a CC] has to be done, then they must be right. Questions only ever came up later. (patient_8)

Once again, it is obvious that patients accepted their physicians’ advice unquestioned and were well aware of the fact that they did not fully understand the situation. This combination of factors, that is, patients’ lack of information and healthcare system-driven physician factors (insufficient information about guideline-recommended approaches and physicians’ preferences towards interventional procedures), increases the risk of overuse. Patient_2 described his situation as a kind of a vicious cycle, thus emphasising the helplessness of his situation:

And soon enough I was going around in circles.

The patient eventually got stuck in a cycle of recurring interventions.

Fear of another cardiac event

A heart attack or chest pain was described as a life-changing experience. Patients expressed different emotions regarding their disease and the treatments. The key emotion described was fear in general and fear of another cardiac event in particular. This fear can manifest in different ways: starting with slight uncertainty about whether they are making the right decision (this, in turn, is closely connected to lack of knowledge), and culminating in panic attacks and fear of death.

Some patients explained that their fears were driven by experiences of family members or friends. Others knew people who had suffered or even died of heart disease. These patients consciously decided in favour of undergoing CC in order to prevent a fatal outcome:

My father had a heart attack, my mother had liver cirrhosis. And my sister recently died of breast cancer. She never went in for a check-up. My other sister had a cyst in her breast. I always think about these things and tell myself: I’d better have the check-up, just to make sure. (patient_7)

Mainly elderly patients claimed they were afraid of dying soon and were therefore willing to have the examination to prevent possible ‘risk factors’:

I prefer to play it safe rather than wait for something to happen. I don’t have that much time left.’ (patient_6)

Other patients reported acute fears for one’s life or panic attacks, particularly shortly after suffering an event:

I must say, I feel very well taken care of here. But I used to come here for any- and everything. You just feel scared. It’s like having a panic attack. (patient_9)

This attitude develops from patients’ fear of another cardiac event. A younger patient who suffered his first heart attack in his mid-40s described feeling vulnerable because he was afraid of being a high-risk patient and he felt the need to act in order to prevent another potentially life-threatening event:

In the past I sometimes came back here [to the primary care practice] in the afternoon to have an ECG simply because I thought it was starting up again. You get so worked up about it. The body seems to respond quite strongly to what is going on in the head. But then [after the ECG] I felt reassured because they would tell me that everything was in order. Strangely enough, the feeling was gone after that. (patient_22)

This understandable insecurity was cited as one of the factors that drive the high number of doctor’s visits and unnecessary CCs. Patients claimed that they decided in favour of undergoing CC to alleviate their fears and be reassured that their heart is healthy:

I once convinced myself that I should have another examination, because I had pain here, only here, and only while I was doing exercise, for example when I walked up a hill. I thought there could be no harm in having another examination. But they didn’t find anything. (patient_8)

Relationship between patient and (primary care) physician

The relationship between the patient and his physician played a major role in decision making about care processes. Our patient interviews showed that the patients’ trust in their physicians both drove and prevented overuse. Patients reported that they did not feel the need to ask questions because of their strong trust in the physicians and the belief that the physicians was only trying to help them; in other words, patients did not believe that physicians had any motive other than curing them:

Above all, that’s what I believe: They just want to help. And the procedure is meant to help. It wouldn’t hurt to be a bit more positive. They wouldn’t just put you through such an ordeal without good reason. They just want to have a look. Thank God this procedure exists. (patient_4)

Strong trust in physicians also contributed to a factor that can prevent the overuse of CC. Patients described their relationship to their primary care physician as being one of confidence:

I am in the best possible hands. (patient_4);

I do anything she [the primary care physician] says. (patient_9).

When asked whether he searched for information about this disease independently, one patient answered:

You always hear and read and see things. Basically, I always rely on what the physicians say. It remains to be seen whether they were right. They have already made mistakes in the past. (patient_1)

Patients’ experiences that repeat interventions do not result in a change of health status or medical care

One patient who had repeatedly undergone 6 monthly invasive angiographies reported his change of heart over time. He reflected that he would have decided differently with his current knowledge, and that his trust in his primary care physician had increased over the years:

Eight years later I can imagine that, with all those six-monthly examinations with stress ECGs, you would be sure to notice pain or other complaints. (patient_3)

Another patient realised that merely following prescheduled appointments for procedures did not help him and did not improve his health status. He learnt that a cardiac event would not go unnoticed and that an appropriate intervention would be found when the time was right:

I had just had surgery in 2009 and I said to myself: Now I have some peace. And then I thought: In the last 14 years you have only had these [coronary] repairs. I was literally waiting for the doctor to tell me that I have to have another repair. But they do this only if you actually have severe discomfort. That is what I read between the lines when I once asked primary care physician: Look, shouldn’t I be having another cardiac catheterization? No, you don’t have any symptoms. Apparently, I would notice when something is about to happen. (patient_2)

Also, one patient reported that he had had two consecutive CCs, but the physicians found no relevant outcomes. He then decided that he would never undergo such an intervention again:

Interviewer: That means you underwent catheterization twice? patient_12: Two consecutive catheterizations, because apparently they discovered something, but then during the second intervention they found nothing. And that’s when I decided that I would never agree to do this again. (patient_12)