Patients' perspectives on a patient-oriented electronic decision support tool to reduce overuse of proton pump inhibitors (arriba-PPI): a qualitative study in primary care

A semi-structured interview guide was developed using the method: Collect, Review, Sort, Summarize [17]. Within interdisciplinary group meetings involving all co-authors the following topics were consented: history of PPI intake, attempts of reduction and stopping PPI, experiences with doctor-patient communication, and finally experiences with the arriba-PPI tool: “[….] Now please think back to your doctor’s appointment [date], where your intake of [medication] was discussed. Please tell me what you remember and how you felt about this appointment.”

We followed the information power concept [18] and carried out interviews until we had sufficient information power for the analysis of our research questions as well as for the generated quality of the dialogue. Considering the main question with regard to the arriba-PPI tool, we began interviews with patients who had previously clearly stated to remember the arriba-PPI-tool seeing on screen during the consultation at the practice (n = 12). We also interviewed patients, who were not sure whether they had seen the tool on screen (n = 18), to evaluate the impact of consultation with the tool without showing the visual contents or the consultation itself (intention-to-treat analysis).

A research associate of the arriba-PPI project with a master in Social Sciences (AS) was trained and carried out the interviews. The interviewer did not know the participants or their GPs. At the beginning of each interview, it was made clear that the interviewer was independent and that opinions in all directions could be expressed openly without any consequences. Reasons for an interest in the research topic were stated by the interviewer.

For analysis, all interviews were taken with anonymized verbatim transcripts of full length. To systematically organize data into a structured format a deductive-inductive approach based on thematic qualitative text analysis according to Kuckartz [19] was used. The transcripts were coded independently by two researchers (AS and MM) to increase the reliability of the study. In the first step of the coding process, the entire material was coded using the main categories, extracted from the interview guide. Additionally the transcripts were partially coded with two further researchers (SW, BB) to improve the initial coding system. All passages were assigned to the main categories, and sub-categories were determined inductively from the material. In a second step, all data were coded according to the finally evolved coding system yielding a category-based analysis along the main topics. Any differences with regard to understanding of topics or assignment to categories were solved by discussion. The coding process resulted in five main topics (consultation appointment with arriba-PPI tool, doctor-patient communication, health problems/symptoms, PPI intake, and intake of stomach remedies other than PPI), and 25 sub-categories. An excerpt of the coding scheme is supplied in an additional file (Additional file 1). The software MAXQDA 20 was used for analysis and coding process. Interviews were analyzed in German. The analysis was continuously discussed and refined in a multiprofessional group (social science, practice assistant, GPs, public health).

Thirty interviews were conducted between January 2020 and June 2020, including 14 men and 16 women. The age of the interviewees ranged from 45 to 82 years (mean 65.4 years, SD ± 9.9 years, IQR 10 years). With regard to average age and sex distribution, the characteristics were similar to the arriba-PPI study, with 54.4% female participants and an age ranging from 18 to 95 years (mean 64.5 years, SD ± 12,9 years, IQR 19 years). The time range between the arriba-PPI tool consultation and the interview varied from 4 to 14 months (mean 8 months). The duration of the interviews ranged between a minimum of 6:23 min and a maximum of 41:39 min (mean 13:29 min). Of the 38 patients contacted for an interview request, six patients refused participation and two patients were scheduled for an interview but could not be reached by phone. Also, the duration of PPI medication varied considerably between the participating patients, ranging from less than 1 year to longer than 20 years. The mean intake duration of PPI medication in the main study was 5.3 years (SD ± 4.39).

Considering patients experience on doctors’ consultation using the arriba-PPI tool, the main category “consultation appointment with arriba-PPI tool” was used to evaluate the encounter of the study patients with the novel arriba-PPI tool.

Apparently, the arriba-PPI tool was not used in all GP-PPI medication counseling appointments. According to the interviews, only 17 out of 30 interviewees reported some kind of counselling with the arriba-PPI tool during their GP visit. Some interviewees remembered the visual tool contents spontaneously or on request, or the printout they received at the end of their consultation on PPI medication. But, in some patients, no evidence of counseling with the tool was apparent, and for other patients it remained unclear whether the tool was used for counseling. Overall, eight patients who recalled the visual content remembered the tool either positively or negatively. Only two patients remembered the traffic light display of the arriba-PPI tool in a clearly positive way.

“[…] and it actually did help me in some way, the traffic light, absolutely. I take on a more conscientious approach now, you know? I no longer just swallow a pill when I have problems with my stomach, sometimes I just drink chamomile tea instead.” (female, 69)

“But, in my head and just the thought that I could get down to yellow, the yellow traffic light, that made me happy, of course.” (male, 65)

One patient, however, associated the tool with rather negative memories:

“A doctor always radiates more than just his knowledge. A doctor always radiates competence and empathy and it all works together, kind of like a counseling package. […] And for me […] when someone reads questions from the computer screen, […] and you recognize that it is not the doctor, but that he is just reading it from somewhere […] then it did not reach me that the questions were simply being read off and I recognized straight away what direction we were heading towards.” (male, 52)

In some cases the tool did not seem to meet the aim of supporting the GP in the consultation. The quoted statement indicates that contents of the tool may appear redundant. It was also mentioned that the GP acts as a "counseling package", highlighting the function of the counselor him-/herself. The GP’s communication skills appear to be of key importance.

In summary, it can be stated that despite the sample of interviewees (n = 30), which mostly included patients who explicitly remembered a consultation with the tool (n = 17), the (visual) tool itself was clearly remembered only by a few patients. With regard to the appointment, interviewees spontaneously remembered participating in the study rather than the counseling appointment with the arriba-PPI tool. It was also positively noted that participation in the study led to a discussion on the use and necessity of PPI medication by the GP. One potential explanation could be the time span with an average of 8 months between the appointment on PPI medication.

With regard to potential influencing factors on taking PPIs, the main categories doctor-patient communication, health problems/symptoms, PPI intake and stomach remedies other than PPI were taken into account. Apparently, in this group of 17 interviewed patients consultation with the tool did not necessarily lead to a modified PPI intake. For 12 patients no change in their PPI dose was documented, four patients successfully reduced their PPI dosage, and one patient successfully stopped taking PPI:

“So for me it was good, […] that one doesn’t always have to take pills, pills, and more pills. Instead, I actually dealt with the whole situation, and if I don’t really have to take pantoprazole, well then I don’t take it. In this regard I trust Dr. R. and I think that that is fine.” (female, 71)

Since this patient was almost blind, she did not look at the visual arriba-PPI features during the consultation. Nevertheless, the stepwise reduction of her PPI intake after the counseling was successful. This case highlights some effective factors for successful stopping and reduction attempts: a trustful relationship with the GP and feeling well cared for during the consultation seem to be the most important influencing factors for a change in attitude towards taking PPIs. With regard to the GP consultations, many patients felt well informed and cared for, although some expressed a lack of consultation und communication. When the reduction attempts were initiated at the GP’s request (as a result of study participation), the PPI intake remained the same after a short period of time, as exemplified by the following quote:

„And he said it is possible that I don’t really need it, the omeprazole, and because of that I should absolutely try to stop taking it, but in small steps, he said. But that didn’t work, so I just started taking 20 mg of omeprazole again.” (male, 64)

This patient reported that his GP said he should "absolutely" try to stop taking PPIs. But the patient "just” continued to take his medication again as before. It seemed there was a lack of internal motivation for this patient.

Further, some patients stated that they could not live without their PPIs and mentioned a fear of pain or a past experience of discomfort when reducing or stopping PPIs, such as problems sleeping without the medication or feeling that their stomach would not function properly without it. Statements like the following demonstrate the potential for being dependent on the drug:

“But I don’t know whether 20 mg every second day may be enough. I don’t want to try that though, I’m too afraid to try. […] afraid that I would get severe pain again which is so EASY to prevent by taking medicine.” (male, 52)

“And when I notice that there are only four or five tablets left for the last / for the next week. Then it’s time / then I quickly order the next pack (both laugh). You’re not trying to take that away from me, are you?” (female, 66)

In summary, we can establish that, for patients, PPI medication seems to be of reasonable importance with regard to the expected quality of life and well-being. Moreover, patients may refuse to reduce or stop their PPI intake because of the proven symptom relief or anticipation thereof. Apparently, the decision on PPI reduction depends on factors during the consultation itself. If a consultation led to/addressed the patients’ personal desire to reduce PPIs, there was a chance that reduction or even termination of the PPI medication could be achieved. Thus, the arriba-PPI tool can support decision making in a conversation between the GP and the patient, but it is not recognized/perceived as absolutely indispensable.