Patients with systemic autoimmune rheumatic diseases (SARDs) self-reported neuropsychiatric symptom prevalence differed significantly from their clinicians’ estimates, according to study findings published in Rheumatology.
Investigators explored a wide range of neuropsychiatric symptoms among patients with SARDs, assessed barriers to symptom identification, and compared patient-reported vs physician-estimated symptom prevalence.
Investigators conducted the Investigating Neuropsychiatric Symptom Prevalence and Impact in Rheumatology patient Experiences (INSPIRE) study, an international mixed methods study that utilized surveys, interviews, and patient self-reports of neuropsychiatric SARD symptoms, including data from both patients and clinicians.
Patients were aged at least 18 years with confirmed SARDs. Clinicians with specialties in rheumatology, neurology, psychiatry, and primary care were invited to participate. A control group comprised of healthy individuals without SARDs were included for comparison.
A total of 1853 patients, 289 clinicians, and 463 members of a control group were included in the analysis. Interviews were conducted among 67 patients and 46 clinicians.
Patients participating in surveys tended to be aged at least 50 years, White (93%), women (91%), and were primarily from the United Kingdom (85%).
Roughly half of participating clinicians were women (53%) and from the United Kingdom (50%); 48% were rheumatologists and 25% were psychiatrists.
Patients with SARDs had a higher lifetime self-reported prevalence for all 30 neuropsychiatric symptoms investigated (cognitive, sensorimotor, and psychiatric) vs the control group.
A total of 55% of patients with SARDs reported they were currently experiencing some degree of depression and 57% reported currently experiencing anxiety, compared with 30% and 33% of control participants, respectively.
The symptoms with the highest reported prevalence among patients with SARDs were fatigue (SARDs, 89%; control group, 34%), insomnia (SARDs, 76%; control group, 49%), and cognitive dysfunction (SARDs, 70%; control group, 22%).
While only 4% of clinicians reported never/rarely inquiring about their patients’ mental health symptoms, 74% of patients reported never/rarely being asked by their clinicians about these symptoms.
More than 50% of patients with SARDs noted they never/rarely reported their mental health symptoms to clinicians, while clinicians estimated this proportion of patients to be less than 10% (both P <.001).
The most significant barriers to identifying neuropsychiatric symptoms included limited objective testing, guidelines, knowledge, and inter-specialty cooperation; symptom believability, invisibility, and subjectivity; and under-reporting, under-documenting, and under-eliciting.
Study limitations included potential recall bias, self-stated diagnoses, and the self-selecting nature of online surveys.
The study authors concluded, “This study provides substantial evidence that the neuropsychiatric symptom burden is higher and more wide-ranging in the majority of SARDs than has previously been recognised, and that symptoms are often underreported and under-recorded. More effective inter-disciplinary and patient-clinician collaboration is required to identify symptoms, and design criteria and research that is more reflective of the SARD [neuropsychiatric] symptoms experienced by patients.”
Disclosure: Some study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures.
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 (Oxford). Published online July 26, 2023. doi:10.1093/rheumatology/kead369