26 July 2023
A new study, published in Rheumatology, provides substantial evidence that neuropsychiatric symptoms in systemic autoimmune rheumatic diseases (SARDs) are more prevalent and wide-ranging than previously reported.
Led by Dr Melanie Sloan (Department of Public Health and Primary Care at the University of Cambridge) as part of the INSPIRE project, this study aimed to investigate neuropsychiatric symptoms beyond those included in existing research and assessment criteria.
Using a mixed-methods approach comprising surveys, in-depth interviews and quantitative analysis, the investigators found concerning levels of disparity between patient-reported and clinician-estimated prevalence of neuropsychiatric symptoms in SARDs. Neuropsychiatric symptoms were under-elicited, underreported, and under-documented.
Notably, clinician underestimation of symptom prevalence was not limited to less well-known symptoms. In systemic lupus erythematosus (SLE), where neuropsychiatric symptoms have been relatively well studied, clinicians estimated that 15% of patients had experienced suicidal thoughts vs. 47% of patients who reported having experienced them. SLE and UCTD patients have the highest symptom prevalence; 70% of SLE patients experienced anxiety and 61% of undifferentiated connective tissue disease (UCTD) patients’ depression.
Sarah Campbell, CEO, commented, “This study provides vital insight into the well-established link between chronic illness and mental ill health. Its findings support the recommendation in BSR's People We Need manifesto which is calling for improvements in the access patients have to integrated mental health support. Given what the study finds on the prevalence of this issue and the deep impact neurological and psychiatric symptoms have on patients, it should be of grave concern to policymakers that only 8% of rheumatology departments in England and Wales have a psychologist embedded in their team, and only 38% of teams have access to mental health professionals. BSR fully supports the study team’s conclusion that more inter-disciplinary and patient-clinician collaboration is needed to ensure equity in the care of patients’ mental and physical health."
Patients also reported less well-known symptoms. The data show a significantly higher self-reported prevalence of hallucinations in systemic sclerosis, vasculitis and UCTD than controls. Patients and clinicians alike reflected on the stigma and fear attached to symptoms and the difficulty of having open discussions as a result. The study emphasises the need to tackle under-reporting by asking probing questions in clinic. Unspecific questions such as “How are you?” tend to elicit non-informative “I’m fine”-type answers, further perpetuating the problem.
Dr Sloan said: “The low level of reporting we identified is a major concern as problems with mental health, fatigue and cognition can be life-changing, and sometimes life-threatening. It’s only by fully engaging patients in their healthcare and by asking them for their views that we will be able to determine the extent of these often hidden symptoms, and help patients get the understanding, support and treatment they need.”
BSR has long recognised the importance of an MDT-led approach to patients’ mental health. In 2016, the rheumatology centre at Guy’s and St Thomas’ NHS Foundation Trust was granted an award for emerging best practice for the team’s one-stop multidisciplinary clinic for patients with fibromyalgia.
This approach consisted of three 30-minute consultations with a rheumatologist, a physiotherapist and a clinical psychologist. PROMs were completed to assess symptoms, with a particular focus on psychological comorbidities, and a personalised management plan was subsequently agreed. Similarly, the rheumatology therapist team at Alder Hey Children’s Hospital was shortlisted for a Best Practice Award in 2020 for their MDT clinic for children with chronic pain, bringing together a clinical psychologist, physiotherapist and occupational therapist for a single, holistic appointment.
Despite these individual success stories in chronic pain settings, Sloan et al.’s findings paint a striking picture of neuropsychiatric symptoms in SARDs, with few hospital systems facilitating effective collaboration and communication between rheumatology, neurology and psychiatry. BSR’s 2021 workforce report echoes these findings, warning of a dearth of mental health professionals within rheumatology services and NHS Trusts.
You can read the full paper in Rheumatology.