Attribution of neuropsychiatric symptoms and prioritisation of evidence in the diagnosis of neuropsychiatric lupus: mixed methods analysis of patient and clinician perspectives from the international INSPIRE study (18 December 2023)

Summary

In a study published in Rheumatology, researchers used the example of neuropsychiatric lupus, an incurable autoimmune disease that is particularly challenging to diagnose, to examine the different value given by clinicians to 13 different types of evidence used in diagnoses. This included evidence such as brain scans, patient views, and the observations of family and friends.

Content

The research, led by a team at the University of Cambridge and Kings’ College London, found that clinicians ranked patient self-assessments as least important in diagnostic decisions, and said that patients both over- and under-played their symptoms more often than patients reported doing so.

One patient shared the common feeling of being disbelieved as “degrading and dehumanising” and added: “If I had continued to have regard for clinicians’ expertise over mine, I would be dead… When I enter a medical appointment and my body is being treated as if I don’t have any authority over it and what I’m feeling isn’t valid then that is a very unsafe environment… I’ll tell them my symptoms and they’ll tell me that symptom is wrong, or I can’t feel pain there, or in that way.”

Fewer than 4% of clinicians ranked patient’s self-assessments in the top three types of evidence. Clinicians ranked their own assessments highest, despite acknowledging that they often were not confident in diagnoses involving often invisible symptoms, such as headache, hallucinations, and depression. Such ‘neuropsychiatric’ symptoms can lead to low quality of life and earlier death and were reported to be more often misdiagnosed – and therefore not correctly treated – than visible ones such as rashes.

Lead author, Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge, said: “It’s incredibly important that we listen to and value patients’ insights and their own interpretations of their symptoms, particularly those with long-standing diseases – after all, they are the people that know what it is like to live with their condition. But we also need to make sure that clinicians have the time to fully explore each patient’s symptoms, something that is challenging within the constraints of current health systems.”