Table 2.

Medication-related burden dimensions as presented in the original model of patients’ lived experience with medicines (PLEM) and components that emerged in this study

Medication-related burden dimensions (PLEM model)	Burden components that emerged from the focus group discussions*	Participant expressions translated from Finnish
Burden of medication routines	Need for preparation and forward thinking (n=5) Time and effort required for follow-up and taking the medicines (n=4) The burden of remembering (n=4) Adapting one’s own schedule (n=3) Additional work caused by medication changes (eg, information search) (n=2)	So, if I wanted to go for a walk today, it’s now six o’clock, so maybe around nine o’clock, it would be possible if I started doing things to get ready for leaving. So, in a way it requires taking a pretty big period of free time to be able to adjust my blood sugar and insulin accordingly that you can then go exercising. (F4D)†
Healthcare-associated medication burden	Treatment costs (n=5) Varying quality of care (n=4) Inconvenience caused by the healthcare system (n=4) Fragmentation of the care process (n=4) Relationship between patient and doctor (n=4) Quality and adequacy of medicines information (n=3) Availability of medicines (n=1)	Sometimes I feel like, as I said, yes, the financial side, that you think about how much they really cost, so sometimes it’s a bit like that, like it’s hard to accept that.That I’ll end up spending quite a lot on them even if I get the reimbursement from health insurance, but still, for example Asacol [mesalazine] is not a cheap drug. Just when I thought about the infusion or that I’d be injecting the biologic myself, I was also a little horrified that what would I have to pay for it all at once if I’d be injecting it myself? And now I’m horrified by these outpatient clinic fees that come regularly, that nothing is really good, but that. (F1I)†
Burden of medication characteristics	Characteristics of the medicinal substance or product (eg, tablet size, storage) (n=4) Quantity of medicines and increase of daily dose (n=2) Total medication (n=2) Environmental anxiety (n=1) Difficulty related to packaging (n=1)	Now then came Asacol [mesalazine] 1600 mg, so now it’s sometimes felt like it—it’s quite big, that somehow swallowing it, a little—sometimes it’s a bit disgusting to take it. (F1I)†
Burden of adverse effects	Experiences of adverse events (n=5) Impact of adverse events on quality of life (n=4) Fears related to adverse events (n=4) Visibility of the adverse events (n=1)	Yeah, that cholesterol thing, so it’s like that I had terrible leg pains, aches from it and then I complained about it to the doctor, so he said to take it in the morning. Why are you taking it in the evening? Take it in the morning, it’s the same thing. Got rid of pain. (M1D)†
Medication-associated social burden	Outward visibility of the medication (n=4) Impact on social life such as hobbies and trips (n=4) Impact on working life (n=3) Other people’s lack of understanding or concern about it (n=3) Attitude of family and peers (n=2) Social stigma (n=1)	In public places, some people might stare a little bit when I have a small box like that where I have, for example, afternoon medicines, so if it happens that I am eating out and then take some [medicine] there, then they look a little bit to see what she grabs there in between? [laughter] Some drugs? Well, they are drugs. (F2H)†

*The n describes the number of groups in which the same topic appeared. Italics indicate a new component that emerged from the focus groups compared with the original model.

†In the participant codes, the first letter reflects the gender (F, female; M, male), the number reflects each unique participant in each condition group, and the last letter indicates the condition group (A, asthma; D, diabetes; H, heart diseases; I, intestinal diseases).