Experts urge greater recognition of patients’ experiences, citing a study where over 1,000 patients and clinicians noted instances of undervaluing patient reports. The research, led by Cambridge and Kings’ College London, reveals that clinicians rank patient self-assessments as least important in diagnoses. It emphasizes the need to listen to and value patients’ insights to accurately understand their conditions, as patients often provide valuable perspectives on living with their symptoms.
One patient shared the familiar 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. They’ll tell me that symptom is wrong, or I can’t feel pain there or in that way.”
Researchers studied how doctors diagnose neuropsychiatric lupus, a tough-to-diagnose autoimmune disease. They looked at 13 types of evidence, like brain scans and patient views. Less than 4% of doctors considered patients’ opinions important, with doctors valuing their assessments most. However, doctors admitted they struggled with diagnoses involving invisible symptoms like headaches and hallucinations. These symptoms, affecting life quality and lifespan, were more prone to misdiagnosis than visible signs like rashes.
Lead author, Dr. Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge, said: “It’s essential that we listen to and value patients’ insights and their 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 ensure clinicians have the time to fully explore each patient’s symptoms, which is challenging within the constraints of current health systems.”Â
Almost half of the 676 patients in the study reported rarely being asked for their opinions on their disease. However, some clinicians, especially psychiatrists and nurses, highly value patient insights, recognizing their expertise in self-diagnosis. The study highlighted that personal factors like ethnicity and gender might influence diagnoses, with a perception that females are more likely to be told their symptoms are psychological.
Male clinicians were more likely to think patients exaggerated symptoms. The study suggests that incorporating patients’ experiences and insights could improve diagnostic accuracy, reduce misdiagnoses, and enhance patient satisfaction, particularly in conditions like neuropsychiatric lupus with challenging diagnostic tests.
Dr. Tom Pollak, a senior author, suggests that combining patient and clinician views can reduce misdiagnoses, especially when tests may not detect certain diseases. This collaboration can improve relationships, trust, and openness in reporting symptoms. Sue Farrington of the Rare Autoimmune Rheumatic Disease Alliance advocates for a shift from a ‘doctor knows best’ approach to a more equal partnership between patients and doctors. The research received funding from The Lupus Trust and LUPUS UK.
In conclusion, the study highlights a concerning trend where clinicians rank patient perspectives as the least important factor in the diagnostic process. This finding underscores a potential gap in understanding and collaboration between healthcare professionals and patients. Addressing this issue is crucial for fostering more inclusive and patient-centered healthcare approaches, ultimately leading to improved diagnostic accuracy and stronger doctor-patient relationships.
Journal reference:
- Melanie Sloan, Laura Andreoli, et al., 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. Rheumatology. DOI: 10.1093/rheumatology/kead685.