Background
Methods
Study design
Identification of patients and extraction of clinical data
Data collection
Qualitative data analysis
Descriptive statistics
Results
Patient characteristics and reasons for non-adherence to regular follow-up visits
Non-adherenta | Adherentb | p value | |
---|---|---|---|
Number of patientsc, n (%) | 43 (32.8%) | 88 (67.2%) | – |
Female, n (%) | 36 (83.7%) | 73 (83.0%) | 0.912 |
Age (years), mean (±SD) | 58.3 (±13.1) | 64.1 (±13.3) |
0.014
|
Disease duration ( years)d, mean (±SD) | 10.9 (±7.6) | 12.4 (±9.3) | 0.792 |
Treatment duration (years)e, mean (±SD) | 9.5 (±7.3) | 8.8 (±7.2) | 0.549 |
HAQ, mean (±SD) | 0.9 (±0.8) | 0.7 (±0.7) | 0.233 |
SDAI, mean (±SD) | 10.0 (±8.7) | 6.9 (±6.4) | 0.078 |
CDAI, mean (±SD) | 9.2 (±8.2) | 7.1 (±7.6) | 0.121 |
PGA VASf, mean (±SD) | 29.8 (±24.7) | 27.8 (±26.7) | 0.453 |
EGA VASg, mean (±SD) | 14.7 (±16.2) | 12.2 (±15.5) | 0.325 |
Pain VASh, mean (±SD) | 30.4 (±25.3) | 28.8 (±28.2) | 0.554 |
SJC32, mean (±SD) | 2.8 (±4.3) | 1.4 (±2.3) | 0.128 |
TJC32, mean (±SD) | 5.3 (±6.5) | 2.6 (±5.0) |
0.008
|
RF positive, n (%) | 19 (44.2%) | 46 (52.3%) | 0.437 |
Factors associated with non-adherence known from the literature
Factors associated with non-adherence known from the literature together with quotes from the interviews are shown in Table 2.“If the doctor does not listen to me or does not take my opinion into account when deciding about the medication that I should take, then I change the amount of the medication myself and I potentially lie to him”; participant no. 182 (female, age 34, Vienna)
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 |
New insights on factors associated with non-adherence
Second, patients felt they were not the hands of experts when being treated by a physician/health professional. This was reported when the treating physicians appeared to be inexperienced which was associated with physicians being perceived either as young regarding their age (participant no. 165, male, age 70, Vienna) or if a rheumatologist asked senior consultants or colleagues for advice during the consultation with the patient. Third, patients who perceived excessive self-control over their treatment were likely to be non-adherent. Participant no. 21 (female, age 57, Vienna) said:“I did not want to do this [take the prescribed medication] anymore. I decided that I do not always want to suppress the inflammation. I want to leave the inflammation as it is, because it is a natural process. I do not want an infusion every month that, moreover, costs so much money, which in fact only supports the pharmaceutical companies. Doctors are brainwashed by the pharmaceutical companies, otherwise they would not prescribe these drugs.”
Fourth, some patients did not feel properly taken care of if the rheumatologist prescribed medicines only without giving advice on daily life issues and non-pharmacological aspects of treatment. New insights on factors associated with non-adherence together with quotes from the interviews are shown in Table 3.“I just started to reduce the medication on my own. And no difference was noticeable. I reduced it myself for a very long time and nothing worse happened. And that's the reason why I haven't been to the outpatient clinic for so long, because I have it under control anyway.”
No. | Factors | Description | Quotation | Domains of the COM-B model |
---|---|---|---|---|
1 | Patient’s strong opinion, similar to a dogma | “Patient’s dogma”, meaning that strong opinions, values, or beliefs that people accept without any doubts facilitated non-adherence. | I am 77 years old now, always worked hard and long hours. I raised 6 children and I was never unemployed. It is no wonder that I am in pain. It indicates that I have been working hard all my life (participant no. 150, female, age 76, Vienna). I don’t like drugs. Drugs made me sick. I never really recovered from that sickness drugs made me. I stopped taking medication. I have now bought a magnetic field mat, changed my diet and now I have no pain anymore (participant no. 48, female, age 56, Graz). | Motivation |
2 | Feeling not to be in expert’s hands when being treated by a physician/health professional | Patients searched for the best and most trustworthy physician/health professional. They had less trust in physicians/health professionals when: physicians appeared to be young regarding their age; when physicians disagreed with the opinions of other physicians; or when a physician consulted another physician for advice. | At the outpatient clinic, two doctors said different things—then I was confused what I should do. Then, I decided not to come to the next appointment anymore (participant no. 28, female, age 43, Graz). The young, unexperienced doctors always want to prescribe drugs [DMARDs], but if that does not work then they are immediately at a loss, do not know what to do and then I simply do not feel well (participant no. 165, male, age 70, Vienna). | Motivation |
3 | Excessive self-control | Patients who perceived excessive self-control over the treatment were less adherent. | When the symptoms are more severe I go to see the doctor, but if they are only mild then I treat them by myself, because I know what will help anyway (participant no. 182, female, age 34, Vienna). It has been a long time since I was at the outpatient clinic. The drug made me uncomfortable. I vomited a lot. I never stopped taking it, because I need it. But I reduced it by myself to half the amount that the doctor had prescribed. The reduction did not affect the pain and I stopped feeling uncomfortable (participant no. 170, female, age 45, Vienna). | Opportunity, with a negative connotation (not using the opportunity) |
4 | Missing a holistic approach | Some patients did not feel properly taken care of if physicians only prescribed medicines without addressing non-pharmacological aspects of treatment, including life-style advice, physical activity and diet, as well as alternative therapies. | All I got at the outpatients clinic was medication. Nothing else. I did water gymnastics with my daughter—that was very beneficial for me, as well as mud treatments (participant no. 99, female, age 56, Vienna). There are also recommendations, for example regarding diet. That is never mentioned. Also regarding sports. The patients have to find out these things for themselves. They are only instructed us regarding medication here (participant no. 182, female, age 34, Vienna). | Motivation |
Differences between medicine and non-pharmacological non-adherence
Strong opinions of patients were primarily found with regards to medications. Patients stopped following treatment instructions because it was not in line with their preferences, values, and beliefs, e.g. pain or inflammation were seen as natural processes, and physicians were considered to be influenced by industry. Environmental factors outside the control of the patients were mentioned regardless of medicines or non-pharmacological interventions. As an example, participant no. 99 (female, age 55, Vienna) argued:“I was told to do full-body exercises [in German: Ganzkörperübungen]. I do these according to my own decision. (…) There are so many things going on in my life. When I have little time, I consider them [the exercises] not so important. And then I just don’t do them.”
“I do not drive and I have to wait until he [my husband] is well again to bring me to the clinic. (…) Initially, I wanted to take the ambulance, but it costs a lot of money and I cannot afford that.”
Time perspective in relation to treatment phase
Time perspective in relation to age
“It was the hopelessness, a bit, that drove me away. When you are in your mid-thirties and they [the rheumatologists] tell you that you have to take strong medication all your life. There must be another way; I do not want to poison my body for such a long time.”