Providing Answers, Support and Hope in Wisconsin

For Clinicians: A Shared Decision-Making Tool (HCQ-SAFE©) to Support Patient Decisions

The treatment of lupus is particularly complex for young patients who must commit to lifelong Hydroxychloroquine therapy, which carries a chance, although low, of eye toxicity. Patients often face challenging decisions in balancing the harms and benefits of Hydroxychloroquine, and this decision-making process is even more difficult for those with limited literacy and English proficiency.

What is HCQ-SAFE©? HCQ-SAFE© is an interactive web-based shared decision-making tool that was developed by researchers at the University of Wisconsin in partnership with patients, clinicians, nurses, pharmacists, and experts shared decision-making, web designing, and health literacy.  This interactive tool helps patients weigh benefits against the rare harms of Hydroxychloroquine. This information helps patients feel supported and confident in their decisions to start or resume Hydroxychloroquine.

Why should we use HCQ-SAFE© during clinic visits? HCQ-SAFE© has been rigorously tested in 300+ visits across different clinics (e.g., university hospital, outreach) by different clinicians (e.g., nurses, pharmacists, doctors). Key highlights included that:

1. HCQ-SAFE© was reviewed with patients in <5 minutes during a visit. 
2. HCQ-SAFE© provided clear information that improved patient understanding, even if reviewed by a nurse, pharmacist, or other clinicians.
3. HCQ-SAFE© review reduced decisional conflicts that can drive nonadherence or early discontinuation of medicine, even in those with language or literacy barriers.
4. >50% of patients resumed taking Hydroxychloroquine after reviewing HCQ-SAFE©.

How to use HCQ-SAFE©? Use the link to access e-versions of HCQ-SAFE©: hcqsafe.medicine.wisc.edu/

How to integrate HCQ-SAFE© in your clinics?

The creators recommend using the following language to introduce HCQ-SAFE© to your patients: “Hydroxychloroquine is a key medicine for people with lupus, and you need to take it for a long time. Let's look at this picture guide together to understand how the medicine works, how it helps with lupus over time, and its rare side effects. Experts and other people with lupus helped make this guide.”

Training video: The creator of HCQ-SAFE© has developed a short 5-minute training video which will guide you on how to effectively incorporate HCQ-SAFE during visits.  

©Shivani Garg 2024; Citations and References: Garg 2023 Lupus BMJ; Garg A&R 2024 (abstract); Request additional information or a laminate version of HCQ-SAFE© for your clinics and patients by emailing the creator of HCQ-SAFE©: Shivani Garg MD MS, sgarg@medicine.wisc.edu; Please use HCQ-SAFE© without any modifications and cite (Garg 2023 Lupus; Garg 2024 A&R (abstract)) the authors in papers, publications, presentations.