Less than 4% of clinicians consider a patient’s self-assessments as one of the top three types of evidence in diagnoses, according to a study of 400 clinicians and 676 patients. “Patients frequently shared the viewpoint that medics rely on results and machines more than what the actual patient states,” wrote lead author Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge, and colleagues in their study.
Although clinicians admitted that they often lack confidence to diagnose patients with “invisible symptoms” like depression and hallucinations, a vast majority of them — including neurologists, psychiatrists, and rheumatologists — gave their own assessments the highest ranking out of 13 types of evidence used in the process of a diagnosis. The evidence ranges from brain scans and blood tests to a patient’s lived experiences and their family or friends’ observations.
Sloan and team delved into how clinicians attempted to diagnose an autoimmune condition called neuropsychiatric systemic lupus erythematosus (NPSLE). They found that 69% of clinicians believed that they were usually in agreement with their patients but only 43% of patients felt that way. In fact, another 46% of patients reported that their clinicians either never or rarely asked them if their condition was flaring.
Many patients spoke out about feeling like clinicians treated their self-interpretations with a lack of respect and that led to distrust and psychological damage in the long run. The researchers quoted an Ireland-based patient who said:
“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… You are giving up control over your own body, and 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…The entire thing has been so protracted, and degrading and dehumanizing…If I had continued to have regard for clinicians’ expertise over mine I would be dead.”
The study’s findings proved how common it is for clinicians to treat their patients dismissively as 62% of neurologists ranked their patients’ inputs or opinions related to their symptoms in the bottom three. Most clinicians perceived patients to be incapable of assessing themselves and also believed that patients either under or over play their symptoms. A neuroimmunologist from England stated that “often patients don’t understand the root causes (of symptoms).” But patients discussed that nine out of 10 times, their initial self-assessments would eventually get verified.
Senior author of the study, Tom Pollak from King’s College London, said: “No human being is always going to be able to accurately pinpoint the cause of symptoms, and patients and clinicians can both get this wrong. But combining and valuing both views, especially when the diagnostic tests aren’t advanced enough to always detect these diseases, may reduce misdiagnoses and improve clinician and patient relationships, which in turn leads to more trust and more openness in symptom reporting.”
Out of the different clinicians who participated in the study, nurses and psychiatrists seemed to be more likely to value their patient’s inputs. A psychiatrist from Wales acknowledged that patients living with chronic diseases “are often expert diagnosticians in their own right.”
In a press release, Sue Farrington, Co-Chair of the Rare Autoimmune Rheumatic Disease Alliance, said: “It’s time to move on from the paternalistic, and often dangerous, ‘doctor knows best’ to a more equal relationship where the patients with lived experiences and the doctors with learnt experiences work more collaboratively.”
The study was published in the journal Rheumatology on December 18, 2023.
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