Themes* | Theme subcategories | Illustrative quotes (1–3) |
Theme 1: motivators | Positive symptom response | “After taking HCQ, I get less easily tired and have energy. I think HCQ response motivates me to take my medication.” |
Fear of disease or hospitalisation | “I take my medications; I don't want to be admitted again with SLE flare.” “I do not want flares, so I take it.” “I just want to feel normal, so I take HCQ.” | |
Knowledge about HCQ role | “I was taking [it] I think you know it did help, you know contribute to helping my body be in remission” “I think it reduces flare-ups and pain and prevents damage.” | |
Time and outcome expectancy | “Knowing that HCQ can take several weeks to months to help my symptoms, encouraged me to take HCQ even when I felt my lupus was active.” | |
Dialogue with healthcare team about concerns or side effects | “I was in remission, and I stopped taking HCQ. It was hard for me to talk with my doctor, but I did discuss with my rheumatologist about my concerns and if I need to start it or if we can monitor for now.” | |
Family support | “I take meds regularly so that I feel less tired, and I can play with my daughter.” “My husband accepted my disease so, I accepted it as well.” | |
Better SLE labs | “I think the biggest thing for me was really, you know, seeing the positive test results knowing that you know, these medications were actually doing something good.” | |
Theme 2: filling information gaps and resolving conflicts | Reliable and curated information sources | “I think people have to be cautious with social media sites.” “I follow lupus sites where professionals and lupus experts share their opinion. It is helpful!” |
Positive impact of information | “I got diagnosed at a young age. I wanted to have kids and was concerned with medications. My doctor said that HCQ will not be an issue. It alleviated my stress.” | |
Complete adequate medication information | “My rheumatologist and my pharmacist give me all med details, like take meds with food.” | |
Theme 3: facilitators | Personalisation of strategies | “I have different alarm tunes for different meds scheduled to be taken at different time of the day.” “I keep meds near my toothbrush so that I take it in the morning.” |
Increased knowledge about lupus and medication | “I feel the correlation between taking meds and feeling better.” “Basically, it came down to the lesser of two evils, med is a lot less bad than active lupus.” | |
Easier schedules | “I was told to take meds at the end of the day, I take HCQ as the last thing after I crawl into my bed. Works for me” “I was told to take both tablets together, so much easier.” | |
Reassurance on safety | “I would like my healthcare team to reassure me that HCQ is safe, and the long-term use would not affect my organs.” | |
Multidisciplinary clinics | “I like the one-stop clinic, if I need a nephrologist or pharmacist or a social worker - they have it, it’s easy!” | |
Theme 4: personal reminders | Personalise reminders | “I leave pillbox lid open so that I remember to take the med.” “I keep water near my pillbox to remind me to take meds.” |
Simple strategies | “Taking both tablets together.” “Using multiple pillboxes helped me.” | |
Reinforcement (two reminders) | “I have a pillbox and I always have an alarm on my phone.” | |
Theme 5: improving communication | Attentive provider and focus on patient | “My rheumatologist makes sure I get my eyes checked regularly so they can kind of look at those results and make sure that they're [eyes] ok.” |
Non-judgemental and positive communication | “I think, if the clinicians start with open questions like what’s going on? Any stress? Can I help? It would help patients to open up.” | |
Team engagement | “Both times I was pregnant and was high risk pregnancy. I think my OB and my rheumatologist were talking a lot” | |
Tailored discussions per patient-relevant details | “I was having drowsiness with HCQ. I doctor told me to take it at night. I felt much better.” | |
Connectivity through EMR | “I pick up my medications if I've got questions, I message, and their response is right there.” | |
Theme 6: building rapport and trust | Trust | “I trust my caregiver and their knowledge and experience; I think building that trust is very important for all patients with lupus.” |
Personal link with healthcare team | “We had that relationship, when he [rheumatologist] could just look at me and say you're not feeling good today right?” |
*Themes ranked from most valuable to least valuable by patients. Only key subcategories for each theme shown.
EMR, electronic medical record ; HCQ, hydroxychloroquine.