Fourteen interviews (duration 45–90 min) were held at the hospital and one interview at HCP’s home. In Table 2 the participants’ characteristics are displayed. Twelve (80%) participants were female and the mean age was 47.4 (range 31–63) years. The mean in employed years was 13.1 (range 3–25) years. Four participants worked in general hospitals, three participants in university hospitals whereas eight participants had work experience in both. Data collection ended after 15 interviews as saturation had been reached after 13 interviews (no new information emerged during two consecutive interviews) [27].

Table 2 Participants Characteristics

Facilitating and hampering factors for medication adherence are listed in Table 3. To present these results in a structured way and thereby enhancing readability, the identified factors were presented according to the taxonomy of medication adherence of the WHO (World Health Organization, 2003). The WHO describes five sets of factors with causes for decreased adherence: Patient-related factors, Condition-related factors, Therapy-related factors, Healthcare team and system-related factors, and Social and economic factors. All identified factors by the HCPs could be placed under these five sets of factors.

Table 3 Adherence factors to medication use according to healthcare professionals in this study

Some factors reported by the HCPs, reflected opposite pools; for instance, short term versus long term onset of effectiveness, inner conflict of medication necessity versus concerns, and showing an open attitude versus lacking confidence and/or not feeling safe enough to talk about e.g. (non) adherence). Other mentioned factors by the HCPs were interrelated: for instance, embedding medication intake in daily routine and travelling or irregular work shifts, having trouble to understand instruction inserts and dealing with complexity of instruction inserts, personality traits such as openness and conscientiousness (e.g. discipline in medication use) and pursuing a solution oriented approach, and creating bond/empathy/trust with patient and initiating shared decision making process by HCPs.

Patient-related factors

Facilitating factors to medication adherence

Patients’ strong self-management skills, such as being able to manage medication stock at home, or being able to taper, dose or temporarily discontinue medication on one’s own account because of holidays or social events, facilitated medication adherence, according to the HCPs.

Rheumatology nurse (51 years, female): “Some patients tell us that they have not taken the medication for three months, or that they taper the medication, or that they changed the prescribed dose on their own account ( …) and that they choose not to mention this (to their HCPs). If you have to take your medication each week, year in and year out, you will probably think: “It is going so well, why not take a tablet less?”

To be able to embed medication use in daily routine was stated by most HCPs as very helpful to patients. HCPs mentioned that for some patients this could be a challenge e.g. when the patient works in irregular shifts.

Pharmacist (39 years, male): “So we accompany someone by the start of using that medicine as best as he/she can. As best as possible in his or her daily life. That is also our great challenge. I always say to our pharmacist assistant: “There is really only one thing you have to do right at the desk and that is find out what someone’s daily routine is and respond to it“. And, ‘mapping expectations’: Finding out how a person lives a life when it comes to the use of medicines and then thinking along from: “how can I make sure that someone is fully capable of doing so (medication use as prescribed).”

Patient’s intrinsic motivation to use medication as prescribed was considered highly valuable. According to many HCPs “wanting life back as before” motivated patients to adhere to medication. This motivation for medication adherence would help the patient to set and accomplish realistic work, leisure and family related activities and goals, and ultimately to maintain autonomy and (improve) health-related quality of life. Reasons to be adherent were, according to all HCPs, the experienced treatment effect, ultimately leading to often improvement of quality of life. Another reason which was mentioned frequently was that patients are motivated to use their medication as prescribed, in order to be able to take care of family. This could be in the role of caregiver (taking care of disabled parents or spouse) or in taking care of the children.

HCPs also mentioned that conscientious patients (e.g. having discipline in medication taking, having the patience to wait for a treatment effect), patients with an open attitude that would enhance communication with the HCPs, and patients who are able to successfully cope with insecurity between how their condition will unfold in the future, were considered to better adhere to their medication regime.

HCPs stated that in their experience, besides positive emotions and feelings that could arise from taking medication and experiencing a treatment effect, patients’ belief that treatment effects would outweigh side effects, the belief that the use of lifelong medication would improve quality of life, and realistic expectation of how the treatment would affect the condition, contributed to medication adherence.

Practical issues that helped medication use were mentioned by the HCPs as well. For instance to be able to open medication bottles or packages, be able to swallow tablets or to administer injections. Providing aids, such as reminders and pill boxes, were considered as helpful to medication use in case of non-intentional non-adherence.

Barriers to medication adherence

HCPs indicated that patient’s negative emotions such as aversion, sadness, anger, and problems with self-image were likely to hamper medication adherence. Problems were described with poorer self-image, describing that patients felt that the use of medication defined them as patients, since living with a lifelong condition meant living with lifelong medication. Patients did not want to be associated with this image all the time. To resist these identity redefinition processes, sometimes denial of the condition was observed and resulted in non-adherent behaviour.

The HCPs thought that many patients did not feel free and safe enough to talk about personal drug-related issues related to their condition, and this affected adherent medication behaviour. For instance, patients’ wish to have children that may require a change in medication strategy. According to the HCPs, many patients still feel intimidated by the status of the treating physician, hampering initiating a conversation about changing the medication regimen.

Pharmacist (31 years, female): “I think that patients admit non-adherence easier to us than to the rheumatologist. They say sometimes: “I am not always taking my medication”, or: “While on holiday, I have not used my medication for several weeks”, or: “When I feel fine, I take less medication than agreed with the rheumatologist”.”

HCPs expressed that patients’ beliefs and misconceptions about the (long-term) side-effects could hamper medication adherence, as patients can be conflicted about the need for medication versus the concerns they (might) have about the medication they take.

Some HCPs mentioned that some patients mistakenly believed that the condition could be cured by taking medication or that the rheumatic condition would not require (life-long) medication. Other patients refused medication as they were unsure about the availability of medication in the future and they fear to be dependent on one particular medication. Some patients do not believe in the prescribed medication and they prefer traditional medication instead. Some HCPs stated that patients have difficulties to understand the instruction inserts of their medications. One HCP mentioned that after a non-medical switch (prescribing a biosimilar after the prescription of a biological), the patient attributed the decreased treatment effect to the biosimilar, and in turn hampered willingness to take the medication.

Rheumatologist (45 years, female): “We put a lot of people on biosimilars at the time. We’ve talked to our patients about that at length. It’s the same drug. Well, yes, you’re now experiencing that it works less. It can, it may, indeed, that it works less. The effect of the drug is becoming less and that could have happened with that other drug as well. I don’t know if we should give people a lot of information about that right now, if it’s really the same drug in the end?”

Therapy-related factors

Facilitating factors to medication adherence

According to the HCPs, a short term to onset of effect of the medication was one of the therapy-related factors facilitating adherence. An experienced positive treatment effect contributed to better adherence as well. HCPs considered the option for tapering medication as a motivation for the patient in order to adhere to the treatment plan. Explaining and discussing the choice in how medication can be administered, especially at the start or when a change is required in the medical treatment, was also considered important to adherence to take away fear and anxiety, according to the HCPs.

Rheumatology nurse (51 years, female): “What do you like more: once a week an injection – you have to do that yourself – or an IV … I have a number of patients who say, “I think it’s – actually – fine. A few hours here in that chair, just reading my paper. That’s really a relaxing moment”.”

Barriers to medication adherence

The HCPs reported that the barrier most often mentioned by patients, was experiencing side effects of their medication use. Dreading possible interactions, such as using concomitant medications that patients fear to be contraindicated, or using medication in combination with alcohol or certain drugs, were also given as reasons that patients may be less adherent to their prescribed medication for their rheumatic condition. Another presumed barrier for adherence according to the HCPs, is the change of the appearance of medication, such as colour or packaging boxes. With regard to therapy related information for patients, many instruction inserts are sometimes too complex and too long, risking misinterpretations and information overload. According to the HCPs, communication is key to prevent or overcome these potential barriers.

Condition-related factors

A facilitating factor to medication adherence

A condition-related factor that may positively influence patients’ medication use according to some HCPs, was the level of disease activity. When the disease activity was high, patients were more willing to use their medication as prescribed.

Barriers to medication adherence

Most HCPs stated that a poor general health status, such as health problems beside the rheumatic condition, can hamper medication use. For instance, comorbidities that require poly pharmacy, or temporarily health issues, such as having a cold resulting in less wellbeing. They felt that without proper informative communication about the necessity of different medications for different conditions, patients are less inclined to use these. The absence of a definite diagnosis was mentioned as a barrier that would make the patient reluctant to follow a proposed treatment plan.

Rheumatologist (50 years, male): “I say to my patient; “Of course, it doesn’t always matter if you have symptoms, to come to a diagnosis ( …). The symptoms are the complaints and you can have them without a diagnosis. Rheumatism is all about medicine for the first year. (..) The second year is very often about “it lands”, that you feel that your body is not like before. That it is no longer real to demand that you will be as before. And that doesn’t come until the second year. And then, of course, you still have all the stages of life”. And that’s what I mean: you have to look a little bit at what stage someone is in (with regard to a prescribed medication regimen).”

Healthcare team and system-related factors

Facilitating factors to medication adherence

Providing the same information by different HCPs, tailored to the patient and repeated when necessary, would benefit the patient according to the HCPs. Especially after diagnosis when medication is commenced or when a change in medication strategy is required, clarity and information about treatment could help with the acceptance of a lifelong condition and subsequently of life-long medication use.

Some HCPs mentioned that barriers to non-adherence should be discussed before and during therapy, since non-disclosure for non-adherent behaviour can lead to unnecessary decisions for treatment change (other medication or different dose). They stated that creating easier access for patients to the HCP when needed, for instance through e-mail, would most likely facilitate adherence.

Rheumatology nurse (51 years, female): “We (colleagues) have already defined the important topics that need to be addressed with the patients, before they come for their first visit. One of these points is the need for probably long-time use of medication. We also explain that we have a schedule to start, use and maybe taper the medication with the focus on best results with as less medication as possible. But, yes, it is a shock for them … I understand. When you have to use medication year in, year out, that is sad information. It must always “land”.”

Some HCPs mentioned that improvements of the service level with regard to medication logistics could facilitate medication use, e.g. delivering medication at home, an easy way to get a refill at the pharmacy and patient-friendly packaging of medication.

A few HCPs stated that adherence to medication can sometimes be attributed to the attitude of the physician towards medication use. According to these HCPs, a strong positive attitude with regard to certain medication can influence the willingness of patients to use this medication as prescribed.

The HCPs also expressed that creating a bond with the patients, specifically in chronic conditions, may lead to more mutual empathy and trust and subsequently to more room for discussion, providing and receiving information about more sensitive topics such as barriers to adherence to medication.

Rheumatologist (55 years, female): “For me it is really important to feel whether patients are taking their medication or not, because only then I can judge whether they are effective or not. Nothing can be as bad as prescribing a higher dose when the condition is progressing, when ultimately it turns out, no matter what the cause is, that the patient was non-adherent (for a while). It would be crazy to change the dose in this case. It is not effective”.

The HCPs stated that for most patients, shared decision-making is essential for adherence to a treatment plan. In their view, the HCP should initiate this process, in collaboration with the patient and if applicable, the rheumatology nurse.

Rheumatologist (50 years, male): “I think that doctors are still trained in the way of ‘thinking in lists’. Symptoms lead to a diagnosis. This diagnosis leads to a treatment plan and the patient has to conform to it. The involvement of the patient is mainly in the implementation phase. I think it is only in recent years that we have come to realise that this is a very limited model. (..) If you ask someone to perform, it only works well, if that patient knows why they should do so and is better informed about it. I think we know much better by now, that the quality of care and the effect of care is really only good, if someone is involved in decision-making at all stages and thinking along in the various steps of the treatment plan.”

Subsequently, the opposite was highlighted as well, many HCPs felt that patients were often not given a choice between eligible medication strategies, partly because some HCPs do not want to take the patient’s decision into account, or because of the prescribed protocols that need to be followed, leaving no room for shared decision-making.

Pharmacist (31 years, female): “We think patients will start using their medicines better, if they feel that they can decide in: “What are we going to do about it now?” As caregivers, we are inclined to think, “This is our protocol. ( … )This is step one of the protocol and so we are going to do it this way.” I think it’s shifting a little bit, but how is it going to be a joint decision? I think that’s kind of hard for doctors, of course, to have a protocol on the one hand, (…) whereas that patient might have something else in mind. It is a difficult dilemma”.

Barriers to medication adherence

Factors that were mentioned by the HCPs as barriers in medication use, were, e.g., limited consultation time imposed by regulatory authorities: this was considered too short to discuss extensively the medication strategy. Some HCPs stated that costs of medication and (lack of) reimbursement of medication are sometimes reasons for patients not to collect their medication at the pharmacy, leading to non-adherence. This was remarkably mostly mentioned about less expensive drugs, since, e.g., bDMARDS are reimbursed by insurance in the Netherlands.

Rheumatology nurse (55 years, female): “Then they’re not going to use the drugs that aren’t being reimbursed anymore, and then they’re going to be in a lot of pain. Then they actually want other painkillers, which are reimbursed. But those often have other side effects”.

HCPs reported that another reason for patients to stop their prescribed medication was awareness about the high costs for medication such as biologics. Patients felt that this money could be spend more useful e.g. for environmental friendly projects or to development projects in poor countries.

Rheumatologist (45 years, female): “Another great example – I think – patients didn’t want to use biologicals anymore, because they are so expensive. She thought that the money should go to a project in India. That’s one. There’s been another one, who also said, “This is too expensive. We, as a society, should not want this.” Yes, she just didn’t want to. Really, they said, “From an economic point of view, I just don’t want this”.”

One HCP felt that their considerations about the choice of medication with regard to costs, can be shared and explained to patients in order to gain understanding resulting to improved adherent behaviour.

Rheumatologist (63 years, female): “What I also mean here: as a doctor, you take the costs into account, so why do we want to keep that away from our patients so constrainedly. In fact, I think we can be transparent about it (that sometimes costs also determines our choice (room for options))…. As long as we can justify that preference in relation to the health gain, it’s fine, isn’t it?”

Social and economic factors

Facilitating factors to medication adherence

According to some HCPs, most patients rely on social support with regard to their medication use. This social support not only includes support from family and friends, but support from their work environment as well, such as support from the employer and colleagues. This support can be the understanding, empathy, or help with physical or cognitive challenges, such as dividing work load and offering adjusted working hours (support at work) or assisting in administering the medication or reminding medication intake (social support). As opposite, fear for loss of career opportunities in the work environment, could lead to non-disclosure of condition to the employer and colleagues and to non-adherent behaviour.

Rheumatology nurse (63 years, female): “Yes, people still think: “Rheumatism? Oh, those are dropouts, contract but not renew.”

Barriers to medication adherence

A factor that was mentioned by most HCPs as a social and economic barrier to patients’ medication adherence, was travelling, due to difficulties with scheduling medication intake, requirements for certain contraindicated vaccinations and difficulties with medication storage. According to the HCPs, discussing these inconveniences with regard to medication use with the patients can sometimes lead to simple solutions.

Rheumatology nurse (63 years, female): “In case of travelling and you need to inject during your holidays, we often advise (after agreement among our team): “You know, just leave your injection for a week, because the risk of infection in terms of storage and temperature is higher than skipping one time your medication”.”

Furthermore, the HCPs mentioned that barriers such as the impact of social media, or stories in newspapers or online about negative medication experiences as well as stories about negative experiences from peers about medication, may trigger non-adherent behaviour. For some patient groups, religious reasons can also affect medication use, such as the Ramadan (not allowing believers to consume food or drinks during daytime, often required in combination with medication).

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