SMILE, an Online Lupus Tool, Can Aid Shared Decision Making

Dr. Singh explains that patients with lupus are generally young to middle-aged women, and lupus is often the first chronic disease they have experienced. “Frequently, the disease manifests with unusual symptoms and is sometimes difficult to diagnose, with diagnoses delayed for years. The disease can present with mild symptoms, such as skin rash or joint pain, or with severe symptoms that involve the kidneys, brain, heart, lungs and other vital organs. Therefore, the disease itself can be very scary.”

Patients initially presenting with symptoms of lupus are often prescribed local skin treatments or glucocorticoid medication. Glucocorticoids are effective in treating mild, moderate and severe symptoms, but they have a lot of short- and long-term side effects, most of which are irreversible. “Therefore, the intent is to use them [for the] short term to gain control, while the definitive therapy with immunosuppressive medication is introduced,” Dr. Singh explains.

Decision Challenges

Patients often show reluctance to make the switch from an effective, more toxic steroid to an equally effective, less toxic immunosuppressive. They perceive the benefit of immunosuppressive drugs as much lower than that of steroids, and “the fear of the side effects with immunosuppressive drugs in most patients’ minds is more than that for steroids,” says Dr. Singh. Some immunosuppressive drugs in much higher doses are also used to treat cancer, “which evokes additional negative feelings from patients,” Dr. Singh explains. “This leads to a major challenge for many patients, who might decline this definitive, effective and safe therapy for lupus, which can be both organ-saving and lifesaving in patients with severe lupus.”

“Therefore, the patient is frequently faced with difficult decisions: What should I do for the disease? Can I wait? Should I take one of these medications that are also used in different doses for cancer chemotherapy? Will I get side effects? Will the disease or its treatments affect my ability to live and to have a family?” says Dr. Singh. Another challenge exists: Lupus severity presents much higher in minority groups and in those with lower socioeconomic status—groups that may have unequal access to healthcare providers and health information. These groups also present with lower health literacy, graphical literacy and numeracy, which makes it difficult for them to take full advantage of health education materials available to people with lupus, Dr. Singh explains.

Dr. Manzi

Regarding health literacy, Dr. Manzi suggests doctors may forget their audience and talk to patients using medical terminology. Often, patients feel too embarrassed to ask questions or say that they don’t understand. Patients may hesitate to express their concerns about taking a prescribed medication or undergoing additional testing. They may also feel reluctant to share that they lack transportation or are struggling financially. These barriers lead to noncompliance, which “is often not a patient being defiant, but a gap in communication between the doctor and the patient about the potential barriers to compliance or fears about side effects,” Dr. Manzi says.