Table 3

Six themes highlighting patient-suggested and ranked strategies to address patient concerns

Themes*Theme subcategoriesIllustrative quotes (1–3)
Theme 1: motivatorsPositive 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 conflictsReliable 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: facilitatorsPersonalisation 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 remindersPersonalise 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 communicationAttentive 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 trustTrust“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.