Patient opinion should be given more weight according to experts after a study revealed clinicians ranked their views as the least important factor during a diagnosis.
For the research, which was conducted by the University of Cambridge and King’s College London, neuropsychiatric lupus was used as a tool analyse the value clinicians gave to 13 different types of evidence used in diagnoses.
The study, published in the journal Rheumatology, found that fewer than 4% of clinicians ranked the patient’s self-assessment in the top three types of evidence.
Instead, clinicians ranked their own opinions highest despite often not being confident in diagnoses involving invisible symptoms as headaches, hallucinations and depression.
“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.
The study’s lead author, Dr Melanie Sloan of Cambridge University’s department of public health and primary care, further added: “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.”
Nearly half (46%) of the 676 patients said they were never or rarely asked about their own thoughts on their disease.
Others did report positive experiences and certain clinicians – particularly nurses and psychiatrists – valued patient assessments highly.
The research, which was funded by the Lupus Trust and LUPUS UK, also suggested that characteristics like ethnicity and gender could influence a diagnosis. Male clinicians, for example, were more likely to say that patients were exaggerating their symptoms.
The authors concluded that, while patient views can be inaccurate, factoring in their opinions during diagnosis could lead to fewer misdiagnoses and greater overall patient satisfaction.
This is particularly the case for neuropsychiatric lupus, which can be especially hard to diagnose as tests for the disease are widely known to be “unenlightening” according to one neurologist.
Dr Tom Pollak, senior study author from King’s College London’s institute of psychiatry, psychology and neuroscience, 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.”
Co-chair of the Rare Autoimmune Rheumatic Disease Alliance, Sue Farrington, added: “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.”
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