Table 2

Eight themes highlighting patients’ insights and concerns about HCQ

Themes*Theme subcategoriesIllustrative quotes (1–3)
Theme 1: medication information gaps and conflicting informationIncomplete medication information“Nobody told me that I could take both HCQ doses together. If I would have known, I would not have missed so many HCQ doses.”
Unreliable sources“I had to go to the internet… not a great place to get information!”
Negative impact of information“I read drowsiness as a side-effect from HCQ. It was very concerning.”
Absence of information“My providers did not talk with about what med response to expect. I never knew if my symptoms were from meds or lupus.”
Concerning or conflicting information“I saw on the internet that HCQ is an anti-malarial drug. I freaked out that I have malaria, and no one ever told me!”
Theme 2: reasons for stopping or logistical barriersSide effects“I had extremely bad nausea with the medication, I had to stop for a few days.”
‘I started losing hair, I thought it is from HCQ, so I stopped it.”
Multiple medications“I have to take 8 different meds at 3 different times. I work 3 shifts a day. Sometimes I forget taking the morning doses… I wonder if I can take it with the afternoon pills or not.”
Lack of perceivable benefits“What does HCQ do for me or my disease?”
“I have not noticed much difference with HCQ.”
“Prednisone helps, I can’t say the same for HCQ.”
Forgetfulness“Lupus affects memory and causes overwhelming fatigue. I sleep often… when I wake up, I forget if I took HCQ or not.”
Changes in social situation“I was in between providers, and I could not get medications as prescribed. It was overwhelming.”
“I lost insurance; I could not afford HCQ.”
“I was in between insurance, I could not get my meds and ended up in the hospital.”
Cost or refills inadequate“I am not sure why we cannot get 90-day fill and several refills.”
Theme 3: misbeliefs and assumptionsLong-term concerns about HCQ“I am worried about losing vision with HCQ use.”
“I am worried about the long-term side effects… on my organs and eyes.”
“Dark urine, concerns me if HCQ is affecting my kidneys.”
Assumption-misinformation“I got cataracts; I have increased power of my glasses. This is HCQ related, got to be.”
“As I undergo regular urine tests, I am concerned about kidney or other organ damage from HCQ.”
Unclear HCQ role in lupus“I get confused about HCQ and SLE, not sure how long it will be in their system, what exactly it is doing, and how it is helping.”
“I was unaware that HCQ improves survival and prevents blood clots in lupus”
Theme 4: emotions and attitudeWorry“Will HCQ be safe for long-term use, I need more reassurance.”
Negative or unsure“I started having several allergic reactions. I did not know what it really was coming from.”
“When I started HCQ, my hair fell out. I was not sure if it was HCQ or something else.”
Experiences of family or friends“It was hard for me to start HCQ, as my mother had suffered from muscle weakness with HCQ.”
Theme 5: comorbiditiesMultiple chronic diseases“I need to know if HCQ could interact with my other chronic diseases?”
‘My fatigue and pain are still there. I am not sure if HCQ is working or not.”
Brain fog“I often forget taking HCQ due to brain fog.”
SLE disease burden“I had severe disease and my SLE led to kidney disease, blood clots, skin rashes, and heart disease. I take several medications. It is overwhelming.”
Theme 6: medication burden and timingMedication schedules and pill burden“My medication timing and schedules are skewed. If I miss a medication, then it is very hard for me to pick back up.”
“I stopped HCQ as it was honestly hard to keep up with the medications at different times of the day.”
Anxiety about medications“I find it annoying to take 1.5 tabs a day. I am worried if this will change med effects.”
“I am worried if my eyesight changes are related or not.”
Themes 7–8: duration of use and patient ageLife course risk
Duration of use
“I was distraught with the idea that I have to take a medication for the rest life.”
“The idea of taking a medication for the rest of my life was unsettling.”
“I could not understand why I needed to take a medication even when I was feeling better.”
  • *Themes arranged from most common to least common listed frequency. Only key subcategories for each theme are shown.

  • HCQ, hydroxychloroquine.