The majority of SLE patients who experienced hallucinations, for example, had increasingly disrupted dreaming sleep preceding their hallucinations. Many patients experienced their first episode of neuropsychiatric symptoms more than one year after the onset of their other SLE symptoms, but neuropsychiatric symptoms could first present at any stage of the disease course of SLE, including the period before a formal validated diagnosis of SLE. Such symptoms as increasing nightmares, sensory disturbances or sudden mood changes, while often not prioritized by clinicians and patients for discussion and monitoring, appeared to be frequent precursors of more tangible disease activity.
Translating the Findings
Dr. D’Cruz and Dr. Sloane initiated their research out of concern that misattribution of early SLE and other SARD neuropsychiatric symptoms might lead to suboptimal or incorrect treatment, as well as persisting psychological damage and patient distrust in clinicians. Their findings reinforced their concerns, but the fact remains that diagnosing neuropsychiatric lupus is challenging, even in expert centers with multidisciplinary teams that include rheumatologists, neurologists, psychiatrists and neuroradiologists.
“What are the criteria you use to diagnose neuropsychiatric lupus?” asks Dr. D’Cruz. “That is where the problem arises. … History is everything.”
In their paper, Dr. D’Cruz and colleagues propose that the best approach to initiating a discussion of neuropsychiatric symptoms is to ask the patient about disrupted sleep and dreams and use more descriptive and less stigmatized language, such as “daymares” rather than “hallucinations.” Such an approach may encourage patients to be open in reporting these often feared and stigmatized symptoms. The bottom line, says Dr. D’Cruz, is to ask and then carefully listen to the answer, searching for emerging patterns and themes within that answer. If patients give even a hint of psychiatric symptoms, especially psychotic symptoms, then clinicians should consider a referral for a psychiatric opinion.
Dr. D’Cruz hopes that the new findings will help destigmatize neuropsychiatric symptoms, and that the consequent discussion of neuropsychiatric symptoms in a safe and nurturing environment will reassure patients. “It’s another spectrum of lupus,” says Dr. D’Cruz. “It’s not easy to diagnose or treat, but it is very treatable.”
Pediatrics
Unfortunately, since neuropsychiatric symptoms are more common in pediatric patients, their disease burden from neuropsychiatric lupus is higher. Moreover, Dr. D’Cruz has found that juvenile patients don’t readily mention psychiatric symptoms to their doctors. “You’ve just got to give the patients time,” he emphasizes, adding that, unfortunately, most rheumatologists are so focused on the complex nature of patients with lupus that they often do not have the time to ask about psychiatric and neurological symptoms.
