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Table 2 Factors associated with non-adherence which are known from the literature and were confirmed in our study

From: I do not want to suppress the natural process of inflammation: new insights on factors associated with non-adherence in rheumatoid arthritis

No.

Factors

Description

Quotation

Domains of the COM-B model

1

Lack of understanding the purpose; no benefit and/or adverse events

Patients were less likely to follow treatment instructions if they did not understand the purpose of the treatment, did not experience a benefit, and/or experienced adverse events and/or toxicity.

If I experience that it [the medication/intervention] doesn’t help or if I do not understand the purpose, he [the rheumatologist] must accept that the instructions are not being followed (participant no. 182, female, age 34, Vienna).

I stopped taking the medication by myself because of severe diarrhoea. I did not wait for an appointment to consult a doctor (participant no. 29, female, age 57, Vienna).

I am getting older and older—the age is increasingly affecting my health. Sometimes I am afraid to do the exercises because everything is more or less deteriorating—the muscles and the bones (participant no. 110, female, age 70, Vienna).

Capability; body structures and functions

2

Implementation requirements

Patients were less likely to follow treatment instructions if the proposed treatment plan was experienced as being too time consuming, including necessary waiting times, and requiring too much effort to be implemented in daily life.

I was personally involved in building a medical centre and therefore I had no time for regular appointments. I was very glad that I did not have to spend a whole morning at the clinic, but instead was able to solve things easier and faster by consulting friends (physicians, but not rheumatologists). I thought that it was not important to see a rheumatologist any more (participant no. 126, female, age 38, Vienna).

I still do my exercises—or correctly spoken again. I have exercises I should do every day. I don’t do the exercises at the moment. I’m very lazy. And now I thought I could start again (participant no. 110, female, age 72, Vienna).

Motivation

3

Lack of supportive environmental factors

Patients were less likely to follow treatment instructions if lack of support of the environment occurred.

My mother cannot speak German. She missed the last appointment. She was not able to make a new appointment and I didn’t have time to make an appointment for her. Then I totally forgot, and that’s why she didn’t come to the outpatients-clinic (daughter of participant no. 74, female, age 55, Vienna, who translated during the interview).

You actually have an appointment but, nevertheless, you have to wait a long time. I was afraid if I said too often that I could not come [to work], I might lose my job (participant no. 143, male, age 47, Vienna).

Meeting different doctors every time is aggravating (participant no. 29, female, age 57, Vienna).

Opportunity

4

Lack of shared decision-making

Patients were less likely to follow treatment instructions if they were not actively involved in a shared decision-making process.

The young doctors at the outpatient clinic were very annoying. They have no empathy. Rheumatism also has a lot to do with the soul of a patient. If young doctors consider themselves more important and think to you know everything better than the patient—that won’t work at all (participant no. 45, female, age 57, Vienna).

At my last visit to the outpatient clinic, I felt I was not being taken seriously and I had the feeling that the outpatient clinic is not patient-centred, but instead pharmaceutical company-centred (participant no. 37, female, age 70, Graz).

Opportunity

  1. The capability, opportunity, and motivation model of behaviour (COM-B) model [21] was used as a frame of reference