Study finds clinicians rank patient opinions as least important for diagnosis

Experts are now calling for more value to be placed on patients’ “lived experiences,” as a study of more than 1,000 patients and clinicians found multiple examples of undervalued patient reports.

Research by a team from the University of Cambridge and Kings’ College London found that clinicians considered patients’ self-assessments least important in diagnostic decisions and that patients overestimated or underestimated their symptoms more often than patients. declared having done so.

One patient shared the common feeling of being seen as “degrading and dehumanizing” and added: “If I had continued to value clinicians’ expertise over my own, I would be dead.” When I show up for a medical appointment and my body is treated. like I have no authority over this and what I feel isn’t valid, then it’s a very dangerous environment. I’ll tell them my symptoms and they’ll tell me this symptom is wrong, or I can’t feel pain there, or that way.

In a study published in Rheumatology, researchers used the example of neuropsychiatric lupus, an incurable autoimmune disease that is particularly difficult to diagnose, to examine the differential value placed by clinicians on 13 different types of evidence used in diagnoses. This included evidence such as brain scans, patients’ opinions and observations from family and friends.

Less than 4% of clinicians ranked patient self-reports among the top three types of evidence. Clinicians gave the highest rating to their own assessments, while acknowledging that they were often unsure about diagnoses involving often invisible symptoms, such as headaches, hallucinations and depression. Such “neuropsychiatric” symptoms can lead to poor quality of life and earlier death and are more often misdiagnosed – and therefore poorly treated – than visible symptoms such as skin rashes.

Sue Farrington, co-chair of the Rare Autoimmune Rheumatic Disease Alliance, said: “It is time to move from the paternalistic, and often dangerous, ‘doctor knows best’ to a more egalitarian relationship in which patients with lived experiences and doctors having lived experiences. learned experiences work more collaboratively.

Nearly half (46%) of the 676 patients said they were never or rarely asked about their self-assessment of their illness, although others reported very positive experiences. Some clinicians, particularly psychiatrists and nurses, placed great value on patients’ opinions, as one psychiatrist in Wales explained: “Patients often arrive at the clinic having undergone multiple assessments, having studied their own condition to a very high level and have worked hard to understand what is happening. with their own bodies…they are often diagnostic experts in their own right.

Lead author Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge said: “It is extremely important that we listen to and value patients’ ideas and their own interpretations of their symptoms, especially those with long-lasting symptoms. chronic illnesses – after all, they are the ones who know what it means to live with their illness. But we also need to ensure that clinicians have the time to fully explore each patient’s symptoms, which is a challenge in today’s environment. health systems. »

Personal characteristics of patients and clinicians, such as ethnicity and gender, sometimes appear to influence diagnosis, particularly the perception that women are more likely to be told their symptoms are psychosomatic. The data showed that male clinicians were statistically more likely to report that patients exaggerated symptoms. Patients were more likely than clinicians to say symptoms were directly caused by the disease.

The study authors acknowledged that patients’ reasoning will sometimes be inaccurate, but concluded that there are likely to be many potential benefits (including diagnostic accuracy, fewer diagnostic errors, and greater patient satisfaction). patients) to include patients’ “ideas of attribution” and experiences in decisions about diagnosis. This is especially important when diagnostic tests for neuropsychiatric lupus are widely known to be “unenlightening,” according to one neurologist, as is the case for many other autoimmune diseases and long COVID.

Dr Tom Pollak, lead author of the study at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, said: “No human being will always be able to accurately identify the cause of symptoms, and patients and clinicians can both understand this. But combining and valuing both perspectives, especially when diagnostic tests are not advanced enough to always detect these diseases, can reduce diagnostic errors and improve relationships between clinicians and patients, leading to more trust and more openness in reporting symptoms.