Importance of Shared Decision Making
Patients need to be active participants to get the best outcomes. They should be clear about what their goals are and what is most important to them. Physicians should be clear on what steps are needed to meet those goals. “If the patient and doctor are not aligned on the goal—how to get there and how to address the obstacles—it will be a frustrating experience for everyone,” Dr. Manzi says.
Dr. Singh calls shared decision making the “cornerstone of rheumatology care” because rheumatologists provide care to patients with uncommon immune conditions, which remain difficult to understand and have a significant impact on lives. Patients with lupus often need treatment with high-risk medications to improve quality of life, preserve vital organ function, and reduce morbidity and mortality related to the condition.
“Shared decision making becomes even more important in lupus, where there are both healthcare disparities in the disease prevalence and disease outcomes. There are challenges of unequal access to health resources and education materials,” says Dr. Singh. “Shared decision making, using patient tools and materials that are usable by all patients, regardless of their socioeconomic status, health literacy, numeracy and graphical literacy, can eliminate some barriers and reduce disparities,” adds Dr. Singh. “Patient empowerment can positively impact both patient satisfaction and disease outcomes.”
The SMILE Decision Aid
The SMILE decision aid can be downloaded from the Google Play Store or the Apple App Store (search for lupus, then find the app, ManageMyLupus) or access it online at www.thelupusguide.com or managemylupus.com. It is available in English and Spanish. “We hope to have more language translations in the future,” Dr. Singh says.
After choosing a language, most lupus patients select the link for Guide A, B, C or D, based on what medication(s) they have tried or are choosing from, while patients with inactive lupus follow the Lupus Light link.
The SMILE tool comprises information on the disease, how lupus affects the body, what patients can expect with flares and periods of quiet disease; a comparison of various treatment options for both mild lupus and severe lupus; information on medication benefits and side effects; and coverage of sex-specific issues, including pregnancy, lactation, fertility and planning a family.
The decision-making aid is easy to understand and accessible to people with a fifth-grade education or above, without requiring advanced health literacy, graphical literacy or numeracy. Patients can access the tool before or after clinic visits with the rheumatologist to better understand the treatment options offered to them and to ask questions of the doctor about the disease, its management and treatment options.
