Themes highlighting patients and healthcare advisors’ suggestions regarding HCQ-SAFE
| Themes | Subcategories | Illustrative quotes (1–3) |
| Knowledge | Knowledge about long-term benefits | HCQ can improve survival & protect my organs… I might have continued HCQ if I had reviewed this tool before. (Patient 4) |
| Understanding of low risk | It (HCQ-SAFE) has transparency in explaining the risks. (Patient 2) Using visual aids showing the low risks will really connect with the patients like me. (Patient 1) | |
| Other common concerns addressed | I had nausea and stomach issues when I first started it… Wish I knew that taking [HCQ] with food could have helped. (Patient 5) | |
| Comprehensible | Content | I like that there are simple facts, it isn’t too wordy, and I love the graphic of the 100 patients which really helps visualize the numbers. (Patient 8) I think the content is relatable and answers questions or concerns that I had with HCQ use. (Patient 10) |
| Clarity/Readability | Make sure forms and texts (fonts/points) are large. (Patient 7) Make font 14 points so that it can be clearly seen. (Healthcare advisor 3) Can you add definition of an organ? (Patient 8) | |
| Appearance | This is awesome! I really think the visuals will be powerful. (Healthcare advisor 4) Again I like the concept of using pictures to try to relay risk. (Patient 6) | |
| Shared decision-making | Dialogue with healthcare team | This tool will help clinicians start a conversation with patients and support informed choice. (Healthcare advisor 4) I think that the hospital should have certain nurses to work with patients and review such tools with us. (Patient 5) |
| Increased awareness/knowledge about lupus and meds | HCQ can reduce the risk of having a blood clot! I wish I had known this sooner. (Patient 4) | |
| Reassurance on safety | It shows the outcomes in the future (10 yr/20 yr) which is helpful. (Patient 11) | |
| Benefits versus low risk | It is good to see the difference in using vs not using Hydroxychloroquine in a graphic way. Looking at the numbers and figures in purple [avoid damage category] I can appreciate how HCQ helps. (Patient 9) It (HCQ-SAFE) will help patients make an informed decision and motivate them to take HCQ. (Healthcare advisor 7) | |
| Format of use | Personalised discussions | Maybe doctors could choose which section they should review with their patients as some information might be more relevant to an individual patient. If a patient is in menopause then doctors could skip pregnancy details. (Patient 5) |
| Method of discussion | During clinic visit… [the] only thing I would suggest is to explain the format early on so we know what we are looking at. (Patient 4) | |
| Mode of sharing | I think that some patients are not able to come into the office and may need to do virtual so give the option to have patient complete this valuable tool online… or through their MyChart option. (Patient 6) | |
| Type of tool (paper vs e-tool) | Make it a pamphlet for patients to take home or an online version. (Patients 10) A laminated copy would be a good talking aid to go through with patients at their visit. Could they also take a paper copy home? (Healthcare advisor 7) | |
| Usability and feasibility | Easy to use | I don’t foresee reviewing this decision aid to take a substantial amount of time. (Healthcare advisors 2, 3, 4) |
| Likelihood to recommend | I am definitely going to use it in my clinics. (Healthcare advisors 1, 2, 3) This would be a great tool for lupus support group leaders and lupus foundations. (Patient 9) Is there a paper version that I can send to a friend? (Patient 2) | |
| Feasible to use in clinics | I believe the aid can be incorporated nicely into clinic discussions. (Healthcare advisor 4) | |
| Team engagement | Could pharmacists review this with patients? (Healthcare advisor 1) | |
| Tailored patient-relevant details | Clinicians do not have to review all pages, based on patient’s concerns or issues, one could tailor discussions. (Healthcare advisors 1, 2, 3, 4) |
HCQ, hydroxychloroquine.