Experts are calling for a shift away from the traditional notion of “doctor knows best.” Clinicians ranked patient self-assessments as the least important factor in making diagnostic decisions.
The study, conducted by the University of Cambridge and Kings’ College London, focused on neuropsychiatric lupus, a challenging autoimmune disease to diagnose.
Surprisingly, patients’ views were often overlooked or dismissed, with clinicians believing that patients both exaggerated and downplayed their symptoms more frequently than patients themselves reported doing so. The study, which involved over 1,000 patients and clinicians, uncovered a concerning trend of patient reports being undervalued and disregarded in the diagnostic process.
One patient described the experience of being disbelieved as “degrading and dehumanizing.” “If I had continued to trust the expertise of clinicians over my own, I would be dead… When I enter a medical appointment and my body is treated as if I have no authority over it, and my feelings are deemed invalid, it creates an unsafe environment. I’ll describe my symptoms, and they’ll tell me I’m wrong or that I can’t feel pain in a certain area or in a certain way.”
Researchers examined the value given by clinicians to various types of evidence used in diagnoses, including brain scans, patient views, and observations from family and friends. Shockingly, patient self-assessments ranked among the bottom three types of evidence considered by clinicians, with fewer than 4% of clinicians regarding them as significant.
Clinicians, however, placed the highest value on their own assessments, even though they admitted to lacking confidence in diagnosing conditions with invisible symptoms such as headaches, hallucinations, and depression. These “neuropsychiatric” symptoms can significantly impact a patient’s quality of life and increase the risk of premature death. They were also found to be misdiagnosed more frequently than visible symptoms like rashes.
Sue Farrington, Co-Chair of the Rare Autoimmune Rheumatic Disease Alliance, emphasised the need for a more equal relationship between patients and doctors. She stated, “It’s time to move on from the paternalistic, and often dangerous, ‘doctor knows best’ approach to a more collaborative partnership where patients’ lived experiences and doctors’ learned experiences are valued and integrated.”
Disturbingly, nearly half of the 676 patients surveyed reported never or rarely being asked for their self-assessments of their disease. However, some clinicians, particularly psychiatrists and nurses, highly valued patient opinions. A psychiatrist from Wales explained, “Patients often come to the clinic having undergone multiple assessments and conducted extensive research on their condition. They have a deep understanding of what is happening in their own bodies and can be expert diagnosticians in their own right.”
Lead author Dr. Melanie Sloan from the University of Cambridge emphasized the importance of listening to and valuing patients’ insights and interpretations of their symptoms. She highlighted the significance of patients with long-standing diseases, as they possess invaluable knowledge of what it’s like to live with their conditions. However, she also acknowledged the challenge of fully exploring each patient’s symptoms within the constraints of current health systems.
The study also revealed that personal characteristics such as ethnicity and gender sometimes influenced diagnosis. Female patients often faced the perception that their symptoms were psychosomatic. Interestingly, male clinicians were statistically more likely to believe that patients exaggerated their symptoms. Patients, on the other hand, were more likely than clinicians to attribute their symptoms directly to the disease.
The study authors recognised that patient reasoning may not always be accurate. However, they concluded that including patients’ “attributional insights” and experiences in the diagnostic process could lead to numerous benefits, including improved diagnostic accuracy, fewer misdiagnoses, and greater patient satisfaction. This is particularly crucial in diseases like neuropsychiatric lupus, where diagnostic tests often provide limited information.
Dr. Tom Pollak, senior study author from King’s College London, highlighted the importance of combining and valuing both patients’ and clinicians’ perspectives. He emphasised that no one can always accurately pinpoint the cause of symptoms, and both patients and clinicians can make mistakes. However, integrating their views can reduce misdiagnoses, enhance clinician-patient relationships, and foster trust and openness in symptom reporting.