‘What is non-renal lupus?’: Bridging the patient, provider communication gap
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When addressing symptoms of non-renal lupus, there is often a disconnect between the rheumatologist’s focus on inflammation-related symptoms and the patient’s need to improve fatigue and pain, according to a presenter here.
“What [rheumatology providers] mean by non-renal lupus is not what our patients mean,” Michelle A. Petri, MD, MPH, director of the Johns Hopkins Lupus Center, told attendees at the 2021 Congress of Clinical Rheumatology-West. “What do you and I mean? We mean the classic signs and symptoms of lupus, the ones related to autoimmunity, that we can put on our disease activity indices. I mean skin rash, active joint disease and serositis.
“But that is not what our patients mean,” she said. “They mean the non-inflammatory symptoms, the chronic fatigue, chronic pain, brain fog, insomnia, anxiety and depression.”
During her presentation, Petri shared data from what she believes is the “most important paper in 2019,” in which Pisetsky and colleagues from the Duke University Medical Center developed a new disease model for lupus specifically intended to address this disparity between patient and provider. In their review article published in Arthritis Care & Research, Pisetsky and colleagues established two subtypes of lupus: Type 1, which includes classic symptoms of lupus able to measured and evaluated by laboratory testing, and Type 2, which features common complaints of fatigue, insomnia and depression.
“The researchers did something I thought was so instrumental in helping us in our discussion with patients,” Petri said. “The mistake I was making was telling the patient that the ‘Type 2’ complaints were not from their lupus; the patients thought that meant that I was dismissing them because often the patient thinks that anything that happens to them must be from their lupus.
“By calling them ‘Type 2’ symptoms and explaining that these are not from inflammation — and therefore will not be helped by our lupus drugs — [the model] gets rid of any patient communication issue where they think we are ignoring them,” Petri said.
Of course, after establishing separate groups, the next step is to take the Type 2 complaints and attempt to “rule out” secondary causes for these symptoms.
“Let’s start out with chronic fatigue, which is the most frequent patient complaint,” Petri said. “It is important to rule out secondary causes of fatigue — especially in lupus — such as hypothyroidism, anemia and obstructive sleep apnea because some of our patients have become very obese.”
The next common complaint is muscle pain, and providers should rule out hypothyroidism and myositis as possible causes. However, Petri also noted that “probably a third of lupus patients have fibromyalgia,” which can be managed with tai chi, exercise and several FDA-approved therapies.
Regarding complaints of anxiety and depression: “Again, this can be a point of a communication issue,” Petri said. “Because if you say to the patient ‘we need to treat your depression,’ often the patient believes you are ignoring them. I would like to have a thirdparty approach depression, which means a referral to psychiatry and often to psychology as well.”
For patients complaining about brain fog, Petri noted that “brain fog is not a cognitive impairment, which means that something is wrong 24/7.
“If you think that is the case, send the patient to the psychologist for formal cognitive function testing,” she added. “However, one of the most common attributes or associates of cognitive impairment turns out to be depression, so again, depression needs to be treated.”
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