“The SMILE lupus tool serves as a conversation starter and allows the patient and the provider to ask and answer specific questions related to one’s disease and allows one to make choices that are consistent with one’s values and preferences,” Dr. Singh says.
Clinician & Patient Benefits
Clinicians can use the SMILE tool as a standardized information system for all patients diagnosed with lupus. It may help educate a newly diagnosed patient about lupus, available treatments and what to expect should a patient experience mild, moderate or severe manifestations of lupus.
The tool “can reinforce the messages doctors discuss with the patient during the visit,” Dr. Singh explains. “If a treatment change is being considered by the provider, they can have patients review specific drugs within the decision tool where both their benefits and risks are discussed. Patients can then have a follow-up discussion with the provider to make a shared decision about which treatment best suits their current condition, consistent with their values and preferences.”
Dr. Singh notes that the tool provides “information on the benefits and risks of steroids that can help patients make informed decisions about when to continue and when to taper steroids. The tool has helpful suggestions for patients about how to mitigate some of the common side effects of other medications and manage these. It can also be used to inform the patient regarding the benefit of common adult immunizations, and how this can mitigate some of the potential side effects of lupus treatments.”
The SMILE tool can also help initiate conversations about pregnancy, fertility and family planning with patients with lupus.
“The tool provides an electronic, individualized and culturally sensitive decision aid for patients choosing options for treating lupus. It addresses health literacy and provides patients with options for treatment, while limiting those options to treatments with equal efficacy,” Dr. Manzi says. “This is shared decision making. Patients feel like they have more control over a disease that can be highly unpredictable.”
Katie Robinson is a medical writer based in New York.
References
- Singh JA, Fraenkel L, Green C, et al. Individualized decision aid for diverse women with lupus nephritis (IDEA-WON): A randomized controlled trial. PLoS Med. 2019 May 8;16(5):e1002800.
- Singh J, Yazdany J, Chatham W, et al. A personalized decision aid to help women with lupus nephritis from racially and ethnically diverse backgrounds make decisions about taking immune-blocking medicines. Washington (DC): Patient-Centered Outcomes Research Institute (PCORI); October 2019.
- Yen EY, Singh RR. Brief report: Lupus—an unrecognized leading cause of death in young females: A population-based study using nationwide death certificates, 2000–2015. Arthritis Rheumatol. 2018;70(8):1251–1255.
- Singh JA, Hearld LR, Hall AG, Beasley TM. Implementing the Decision Aid for Lupus (IDEAL): Study protocol of a multi-site implementation trial with observational, case study design: Implementing the DEcision-Aid for Lupus. Implement Sci Commun. 2021 Mar;2(1):30.
