Exploring strategies to support medication adherence in patients with inflammatory arthritis: a patient-oriented qualitative study using an interactive focus group activity

Figures & data

Table 1 Characteristics of focus group participants

Characteristics	Female (n=17)	Male (n=10)
Demographics
Age at focus group (years)
20–29	2	–
30–39	1	2
40–49	3	2
50–59	3	3
60–69	5	2
70–79	3	–
Preferred not to report	–	1
Highest level of education completed
High school or equivalent	–	1
Vocational/technical school	3	1
College/university	14	8
Time since inflammatory arthritis diagnosis
≤1 year	2	–
2–5 years	3	4
6–9 years	2	1
10+ years	10	5
Ethnicity
Caucasian	11	7
Asian	4	1
Others	2	2
Inflammatory arthritis diagnosisa
Ankylosing spondylitis	4	1
Adult-onset Still’s disease	1	–
Gout	1	1
Granulomatosis with polyangiitis	1	–
Psoriatic arthritis	–	5
Rheumatoid arthritis	11	4
Sjögren’s syndrome	1	–
Systemic lupus erythematosus	1	–
Current medication(s)a,b
Traditional DMARDs
Azathioprine	1	–
Cyclosporine	1	–
Gold	3	–
Hydroxychloroquine	3	3
Methotrexate	10	5
Mycophenolate mofetil	1	–
Sulfasalazine	1	1
Biologic DMARDs
Abatacept	1	–
Adalimumab	1	1
Etanercept	1	5
Golimumab	3	–
Rituximab	1	–
Urate-lowering therapy
Allopurinol	1	–
Febuxostat	–	1

Notes:

a More than one diagnosis or medication could be reported per participant.

b Prescribed at time of focus group.

Abbreviation: DMARD, disease-modifying anti-rheumatic drug.

Table 2 Illustrative quotes for themes on living with and taking medications for inflammatory arthritis

Theme 1: Adapting to life with inflammatory arthritis
Categories	Quotes
1. Being diagnosed	“I was diagnosed with psoriasis in 2003… I think the lack of dealing with that head on made me, or caused it to have psoriatic arthritis.” (PsA, etanercept)
2. Losing identity	“…I’ve had to adjust a lot and it seems to be a continual process of adjusting to your new normal. And you’ve had to basically grieve the loss of your old self and get over yourself.” (RA, SjS, cyclosporine, adalimumab)
3. Accepting the disease	“And I too being diagnosed so young, I kept thinking I’m going to get past this. And I bet you it took me 25 years before I finally gripped that I’ve got this for life and that I’m going to have bad days and good days. So that was the real turning point for me where I finally started to be more accepting of it.” (RA, methotrexate, golimumab)
4. Experiencing personal, social and career impacts	“…and even the social implications because of the fact that a lot of times it’s episodic or unpredictable. You can get up one day and you’re feeling fine and the next day could be, like, okay I can’t get up. And so even the implications for working or implications for social. You make plans with people and you have to cancel or postpone or something like that. Where before… So it does impact your life. It all impacts your feelings because it’s emotions and you do go through a lot of emotions.” (RA, SjS, cyclosporine, adalimumab)
Theme 2: Complexities and dynamic nature of taking medications
1. Taking medications	Managing multiple medications
	“…we started this whole regime of three or four drugs and the side effects on all of those.” (RA, methotrexate, rituximab)
	Using needles
	“I’m going to have to psych myself up to do it. Even though I’m good with the needle and it doesn’t hurt at all, it’s a real psych up to do it. I always end up putting it all to the last thing at night.” (RA, hydroxychloroquine, methotrexate, sulfasalazine)
	Frequency of taking medications
	“…I’d like to tell [drug companies] to make some pills that are more sort of like a methotrexate that you take once a week rather than every day or whatever. Make it last longer but somehow design it and such so that it’s slow release.” (RA, methotrexate)
2. Trialing medications	“…if I’m not feeling well on the drugs that I’m on, that’s when I’m back to see [my doctor] and then she reviews it and switches me to something else. But she doesn’t keep me indefinitely on the same drug.” (RA, methotrexate, golimumab)
	“Right now we’re playing around too. I might have to switch in, like, three months to a different biologic. So that’s not fun and always the daunting question of, ‘What do you want to do?’ I don’t know what I want to do. I just want this to get better. That’s all I want! Like, I don’t care. Put me on what works.” (AS, golimumab)
3. Being able to afford medications/getting access to medications	“For me it’s the cost… Based on what is covered… Because most of my medications are covered… The ones that aren’t, I sort of intermittently take because I can’t afford them.” (GPA, methotrexate)
	“I understand that there is a protocol in place because the biologics are so expensive. But the suffering that we go through… and my rheumatologist is apologizing because she just wants to get me on the biologics but it’s such a process to get there. And I think that’s cruel and unusual punishment.” (RA, gold)
4. Dealing with unwanted effects of medications	Side effects
	“… I’ve had all kinds of strange illnesses and infections and rashes. I’ve had whooping cough, I’ve had pneumonia…” (AS, adult-onset Still’s disease, methotrexate, sulfasalazine, etanercept)
	Long-term effects
	“I worry about long-term effects, being nauseous pretty well all the time. It feels sometimes like I just have a belly full of poison and I should purge it. That’s what it feels like.” (RA, hydroxychloroquine, methotrexate, sulfasalazine)
5. Not taking medications	Intentionally
	“So I think there is a lot of psychological stuff that holds people back from taking the drugs because they do not want to accept this chronic condition.” (PsA, methotrexate, etanercept)
	Unintentionally
	“Because if I’m out with friends or if I’m really tired after a long week, I will forget.” (RA, hydroxychloroquine, methotrexate, tocilizumab)
6. Feeling better with medications	“It’s like a cloud has been lifted and I can function.” (PsA, methotrexate, adalimumab)
	“And other times I really feel like it’s making a big difference…” (RA, hydroxychloroquine, methotrexate, sulfasalazine)

Abbreviations: PsA, psoriatic arthritis; AS, ankylosing spondylitis; RA, rheumatoid arthritis; GPA, granulomatosis with polyangiitis.

Table 3 Illustrative quotes for themes on strategies and supports for medication use in inflammatory arthritis

Theme 3: Developing lifestyle strategies for medication use
Categories	Quotes
1. Making medication taking a routine	“I self-administer my own meds with a pill case and I do that every morning. My regime is that I get my husband off to work and I get my meds ready in my pill case and I start in the morning. I start taking water and my meds.” (RA, methotrexate)
	“And because I only take it morning and evening it’s easier to be routine. But with my Enbrel and methotrexate, I have to take that once a week. So I try to keep it the same day so that I remember to take it.” (AS, Adult-onset Still’s disease, methotrexate, sulfasalazine, etanercept)
2. Planning ahead	“But that’s how I do it to make sure that I’m not running around taking a drug, feeling terrible and then you don’t want to take it. So I always make sure there’s a dead time.” (PsA, methotrexate, etanercept)
	“Always make sure that you have some with you in case you forget to take it.” (AS, adult-onset Still’s disease, methotrexate, sulfasalazine, etanercept)
	“…okay, inject [methotrexate] Friday and you know you can be sick on Saturday.” (RA, rituximab)
3. Having physical reminders and prompts	“I would take that [medication] with my toothbrush. My pills would be bedside my coffee cup in another container and I would know that it would happen.” (RA, methotrexate, rituximab)
4. Organizational tools	“I have all my medication put in a bubble pack. That way I do not have to figure out what I’m going to take.” (GPA, methotrexate)
	“I use a paper calendar. I put it in there. Every week there’s a notation there to remind me because I inject once a week” (PsA, gout, etanercept, febuxostat)
5. Personal attitude	“That’s my biggest tool is trying to keep the spirit. I’m very determined that I’m going to try to make this be the least amount of impact. Even though I might never really get better, trying to stay chipper is more powerful than anything.” (RA, hydroxychloroquine, methotrexate, sulfasalazine)
Theme 4: Becoming informed about medications
1. Information at the time of diagnosis	“I just think that the patient education part is lacking in the beginning when I found out and that probably would have helped me, like, okay I have to take my medication.” (AS, hydroxychloroquine, golimumab)
	“I would like to just highlight the education part of it. I think if you know what you’re dealing with, what all the tools are right from the outset, that you can, most people can intellectualize their routine and how important it is and then find a tool that works.” (PsA, gout, etanercept, febuxostat)
2. Information needs	How to take medication
	“You could eat the wrong things in combinations with some medications if you don’t know that you’re not supposed to eat or drink, you know, like alcohol or whatever.” (RA, SjS, cyclosporine, adalimumab)
	Side effects
	“Explain to me why it says I can possibly get cancer from this drug. Because I’m sure it’s a reason like someone, I mean we’ve all googled it. Someone was taking the drug while they got cancer. But when I read it on my box of Enbrel, I’m thinking, ‘oh dear this thing is going to give me cancer?’ All of that information would be very helpful. I’d be less frightened to take Enbrel every week if I really knew why it said [that]…” (AS, etanercept)
	How the medication works/Importance of the medication
	“The knowledge is basically why I am taking this medication for. So that I understand that basically what it’s going to do to my body. Is it going to work? And just basically educating myself from that drug and understanding how it’s going to work in my body.” (PsA, etanercept)
	Information from other patients
	“I guess there would have to be an initiative to, I guess, people like us who write down their experiences and it is verified by their doctors that this is their experience.” (RA, hydroxychloroquine)
	Information for family members and caregivers
	“….But you go through this personal trauma and when your family is not as informed as you are, you know…” (RA, gold)
	Getting trusted information
	“And one thing for me that’s really important is knowing that the information is trusted. And I know sometimes… I’ve gone to the Mayo Clinic or I’ve gone to Live Strong or some different sites like that. And comments are helpful when, you know, sometimes you read the comments and sometimes they’re helpful and sometimes they’re not. And what would be great would be if there were sort of doctor-approved comments or doctor-approved experiences.” (RA, hydroxychloroquine)
	“…like it has to come from a reliable source on the Internet and not everybody knows what reliable sources are.” (RA, SjS, cyclosporine, adalimumab)
3. Means of receiving information	Arthritis group classes
	“Not everybody will do it [medication use] the same way. But I think having somebody here [at the arthritis centre] like one of the resource people emphasizing the tools because I don’t remember anyone talking to me about how I will establish good habit and regimen and how to maintain it. I don’t remember that happening in a conversation ever. I just figured it out for myself.” (PsA, gout, etanercept, febuxostat)
	Written resources
	“I find it helpful to have handouts, like to have a hard copy of something and not just in their head information because my head gets overloaded.” (RA, methotrexate)
	Digital technologies
	“Well I use my rheumatologist and then we go through pros and cons. Then I go away and I always do research on the Internet.” (PsA, methotrexate, etanercept)
	“So I think just having some…even maybe an app that would educate you about certain things. Like the knowledge that would come from a nurse or dietician.” (RA, SjS, cyclosporine, adalimumab)
Theme 5: Receiving support
1. Support from health care team members	Rheumatologist
	“Well I use my rheumatologist and then we go through pros and cons.” (PsA, methotrexate, etanercept)
	Nurse
	“And also what helped when I was on Humira, a nurse came to help me with my injections. And so it was just like in the beginning. But that helped a lot just, you know, her teaching me.” (AS, hydroxychloroquine, golimumab)
	Pharmacist
	“For me it’s my pharmacist. I can ask them anything. They will answer me or if I need a printout of certain information of a drug then they will get that for me as well as I don’t have access to the internet or a computer.” (GPA, methotrexate)
1a. Challenges with health care team members	Need for more time
	“I would have liked to have more of that [information] from both of my rheumatologists. I mean I think once I was diagnosed with ankylosing spondylitis, I then went home and looked on the internet what that was. I know I’m seeing a rheumatologist. This is something arthritic but can you spend 15–20 minutes explaining to me a disease that is going to affect me for the rest of my life. Not, ‘you’ve most likely got ankylosing spondylitis. Here’s Enbrel and let’s try this.’” (AS, etanercept)
	“It would be nice if they [pharmacists] had more time to help you. But they’re so busy. You go to them and, okay, they just kind of like read off what it says and they give it to you. ‘Have you taken this before?’” (AS, hydroxychloroquine, golimumab)
	Communication between health care team members
	“My GP really knows nothing about what’s going on except the faxes that she gets. My two rheumatologists do decently, you know, and then I saw somebody..[ ]….and he’s trying to talk to one but the other one is not talking. So you’re doing a lot of work. It sometimes feels like a full-time job and, okay, who is going to treat me next. What am I doing?” (AS, etanercept)
2. Support from family	“My husband is the only one who can give it [the injection] to me. We do it at home.” (RA, gold) “And I think my kids because they are teenagers and they are always texting so I think they can text me and remind me to take anything.” (RA, methotrexate)
	“But my mom constantly text messages me because she knows how much I dislike my medications and she’s constantly on me with being ‘Have you taken your pill?” (AS, golimumab)
3. Digital technologies to support medication use	Internet
	“Well I use my rheumatologist and then we go through pros and cons. Then I go away and I always do research on the internet because I’m always challenging the status quo.” (PsA, methotrexate, etanercept)
	Smartphones
	“…the fact that most people now and especially baby boomers coming on stream who will likely get arthritis. They all have iPhones…” (RA, methotrexate, rituximab)
3a. Desired features of health apps	“If you had an app that was kind of like the Fitbit app where you could organize all your medications with the dosage and the days and then have it just set reminders … all in one. Because right now I have a calendar, I have a reminder like on my phone for time. I have someone text messaging me and I have the pharmacist calling. So if that could all be combined in one, that would be so incredibly helpful… If it was linked [to websites] where you can actually look at this is the side effect and these are the drug interactions… almost like an information thing. That would be a lot more helpful then having to go to all these things individually.” (AS, golimumab)
	“I would like an Apple application. There are a couple out there and all they really do is remind you or they remind the person that you assign if you don’t take your medication. But for me sometimes I push it back earlier or later. So I like the reminder of ‘hey take your medication’, and then actually ask, ‘oh did you take your medication or did you take it the next day? And why did you change it?”’ (PsA, methotrexate, adalimumab)
	“The other thing would be to do a non-techy app thing, which would be to develop a wheel that’s divided into seven pieces of pie, so to speak, which has each day of the week on it and with only day being revealed and you turn it each day. And in there it says exactly what you’re supposed to be taking that day.” (RA, hydroxychloroquine)
	“I would say, you know, an app where nobody sends you a message but it syncs between the pharmacy, my phone, my insurer, so that I’m not getting a message necessarily. But, you know, every day I’ve got to slide, okay, yeah I took my morning pills, I took my afternoon pills. When I’ve taken my Enbrel… something pops up and says, ‘Would you like the pharmacy to re-order any more for you? Slide yes.’ That could possibly report back even to my rheumatologist for how often I’m taking my drugs… It could link up to your insurer.” (AS, etanercept)
4. Other supports	“I was set up with well not a nurse but the drug company themselves. And they did everything for me from the special authority, like chasing down [my rheumatologist] to help to see if they processed it.” (AS, hydroxychloroquine, golimumab)
	“For example, when I started on Enbrel I got an information kit in the United States. That’s a whole different story. But you should see what you got. You got this great big fancy case and you got cold packs and a little travel thing. They must have put $100 into that little thing so that you would buy their Enbrel.” (PsA, etanercept)

Abbreviations: PsA, psoriatic arthritis; AS, ankylosing spondylitis; RA, rheumatoid arthritis; GPA, granulomatosis with polyangiitis.

Figure 1 Framework for patient-oriented adherence interventions for inflammatory arthritis based on relationship between study themes on becoming informed about medications (Theme 4) and receiving support (Theme 5).