“Patients don’t think about their [Systemic Lupus Erythematosus Disease Activity Index] score, they think about how they feel, and they think about what they can do,” she said.
Cognitive difficulties, depression, pain and fatigue can all have a huge effect on quality of life. Non-pharmacological therapies may be just as important as medications for managing these symptoms, she said.
Symptoms that can affect quality of life are often multifactorial. Example: A 2021 review on fatigue in lupus found that an array of factors contributed to quality of life—obesity, depression, vitamin D deficiency, etc. Disease activity was one contributor. The authors’ suggested using a validated instrument—such as Patient-Reported Outcomes Measurement Information System or another patient-reported outcome measure—and then do a personalized investigation to identify these factors for a particular patient. The goal is for clinicians to proceed with interventions that fit that patient’s profile.4
At Duke, researchers introduced a new way of categorizing lupus symptoms in an attempt to acknowledge that symptoms can arise from different sources. One type of lupus, under this categorization system, is the more active inflammatory type involving synovitis, rash and other symptoms and another involves such symptoms as fatigue, myalgia and mood disturbance. Treatment that helps with the first type of lupus may not help with the second type, Dr. Sammaritano said.5
“Their motivation in doing this [study] was to actually improve physician-patient communication because it’s important for physicians and patients to understand what’s going on and maybe to think about what might be causing the symptoms,” Dr. Sammaritano said. “Therapies may differ.”
Connect with Patients
Monique Gore-Massy, who has lupus and is an advocate for lupus awareness, issued a challenge to clinicians to do a better job of connecting with their patients.
“We need to recognize that our patients have been through something” even if they may not appear to be sick, she said. “We need to hear them; we need to acknowledge all of their journey.”
Ms. Gore-Massy emphasized the need for clinicians to use person first language, in which people remain people rather than become subjects. The disease is just “what the person has” and not “what the person is,” she noted.
Providers may be connecting less with patients than they realize. “Consider [the] emotional ignorance that you might have as a practitioner, as a researcher,” Ms. Gore-Massy said. “Are you lacking empathy, compassion and understanding? And do your patients feel like their whole authentic selves [while] in your care?”
