Researchers analyzed patient and clinician perspectives on neuropsychiatric (NP) symptom occurrence and found discrepancies potentially impacting patient care.
According to a recent study published in Rheumatology, the burden of neuropsychiatric (NP) symptoms in patients with forms of systemic autoimmune rheumatic disease (SARD) may be more prevalent than previously thought.
Identifying NP symptoms in patients with SARD can help guide disease management and diagnosis. Pinpointing these effects has become increasingly important because research shows that patients with SARD experiencing NP symptoms have higher rates of mortality and morbidity. Yet, NP symptoms often go under-documented, under-identified, or under-reported.
The authors point out meaningful gaps in medical literature regarding the association between NP an SARD that exacerbate this issue. Previous research has presented a limited range of considered symptoms and paid little attention to how frequently clinicians engage with their patients about NP or mental health (MH) symptoms. Past prevalence studies have hinged on patient self-reports; however, there are a myriad of reasons—such as fear of stigma or mislabeled psychiatric diagnosis—that may cause patients to hesitate disclosing certain symptoms to their clinician.
To locate and address these gaps, researchers aimed to draw out and compare patient self-reports with clinicians’ estimations on prevalence. Additionally, they expanded their surveying to include 30 NP symptoms, all in hopes of unearthing the factors that are contributing to their lack of clinical consideration or inclusion in research.
The online platform, Qualtrics, was made available on social media, in professional networks, and in patient support groups to survey patients, clinicians, and unaffected individuals (controls) on an international scale. These surveys asked for patients and controls to report the frequency that they have experienced each symptom over the course of their life (never, 1-3 time, > 3 but not often, often, always). Higher numerical scores indicated a higher experienced frequency (0 = never; 6 = always).
In total, 1853 patients, 289 clinicians (largely composed of rheumatologists, psychiatrists, and neurologists), and 463 controls were incorporated. Sixty-seven of the patients were also interviewed, as were 46 clinicians. The patient (SARD) group consisted of individuals with systemic lupus erythematosus (SLE), inflammatory arthritis, systemic sclerosis (SSc), vasculitis, undifferentiated connective tissue disease (UCTD), Sjogren’s syndrome (SS), myositis, and polymyalgia rheumatica (PMR).
The SARD group self-reported a significantly higher lifetime experience with NP symptoms (> 3 times) than the control group, most notably in fatigue (89% vs 34%), insomnia (76% vs 49%) and cognitive dysfunction (70% vs 22%).
A large contrast was also observed between the SARD group’s self-reporting and clinical estimations, with 74% of patients reporting they were never or rarely asked about MH symptoms, compared with 4% of clinicians reporting they never or rarely inquired about this with their patients. Over half of the patients with SARD never or rarely brought up their mental health symptoms to clinicians, which clinicians underestimated at less than 10% (P < .001).
It was determined that obstacles such as (1) limitations in knowledge, testing and criteria; (2) subjectivity, invisibility and believability of symptoms; and (3) under-reporting, under-documenting, and under-eliciting contributed to the lack of NP symptom identification. Various patients felt that their symptoms were overlooked or dismissed by their clinicians. When this wasn’t the case, many reported that their NP symptoms were not documented accurately—if at all. Clinicians, on the other hand, mention how their testing measures can make it easy to overlook NP symptoms if, for example, and MRI does not result in any abnormal observations. Furthermore, one rheumatologist made a point that focusing on “mood” when assessing a patient with lupus has not previously been considered relevant or necessary.
The researchers’ findings exhibit the value of sourcing data directly from patients and provide a strong argument for why clinicians should explicitly inquire about these symptoms—even if they appear unrelated to clinical diagnoses. Although self-repots open the door for potential biases, more objective measures may underestimate the prevalence and range of NP symptoms. Overall, the authors emphasize the value of using patients as “equal collaborators” in this type of research.
The results of this study surprised many clinicians and served as motivation for improving their own clinical practice. As an interviewed rheumatologist commented, “It is very interesting because you haven’t used just the symptoms in the published criteria and this has come from the patients, so it is important for us to know. I am worried now I have been underestimating these symptoms in my patients.”
Sloan M, Wincup C, Harwood R, et al. Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study. Rheumatology. Published online July 26, 2023. doi: 10.1093/rheumatology/kead369