Research highlights the need to incorporate patients’ lived experiences into medical diagnosis and advocates for a more collaborative relationship between patients and clinicians to enhance diagnosis. Accuracy and patient satisfaction.

Experts today called for more value to be given to patients’ “lived experiences” after a study of more than 1,000 patients and clinicians found multiple instances of patient underreporting. There is.

The study, led by a team from the University of Cambridge and King’s College London, found that clinicians ranked patients’ self-assessment as the least important in making diagnostic decisions, and patients were more likely to overestimate or underestimate their symptoms. It was found that patients were evaluated more frequently than patients reported doing so.

One patient shared a common sentiment that disbelief is “degrading and dehumanizing,” adding: As if I don’t have authority over it and what I’m feeling isn’t valid, in which case it’s a very dangerous environment…When I tell them the symptoms, they think the symptoms are I would say wrong, otherwise I could not feel the pain there or in that way. ”

Diagnostic issues of neuropsychiatric lupus

In a study published today (December 18th), RheumatologyUsing the example of lupus neuropsychiatric, an incurable autoimmune disease that is particularly difficult to diagnose, researchers examined the different values ​​clinicians place on 13 different types of evidence used in diagnosis. . This includes evidence such as brain scans, patient views, and observations of family and friends.

Less than 4% of clinicians ranked patient self-assessment among the top three types of evidence. Clinicians ranked themselves among the highest despite admitting that they often lack confidence in diagnoses that involve less visible symptoms such as headaches, hallucinations, and depression. It has been reported that such “neuropsychiatric” symptoms can lead to poor quality of life and early death, and are more often misdiagnosed and therefore not treated correctly than more visible symptoms such as rashes. It has been.

Aiming for a collaborative relationship between patients and clinicians

Sue Farrington, co-chair of the Rare Autoimmune Rheumatic Diseases Alliance, said: “We are moving away from the paternalistic and often dangerous ‘doctor knows best’ mentality and towards patients with lived experience. “The time has come for experienced physicians to move towards a more equal relationship.” The learned experience works more collaboratively. ”

Almost half (46%) of the 676 patients reported never or rarely being asked about their self-assessment of their illness, while others were very positive. I talked about my experiences. Some clinicians, particularly psychiatrists and nurses, value patient views, with a Welsh psychiatrist explaining: “Patients often arrive at the clinic having undergone multiple evaluations, researched their condition to a very high level, and worked hard to understand what’s going on with their body. …They are often expert diagnosticians in their own right.”

Lead author Dr Melanie Sloan, from the University of Cambridge’s School of Public Health and Primary Care, said: After all, these are people who know what it’s like to live with their condition. However, we also need to ensure that clinicians have time to fully investigate each patient’s symptoms, which is difficult within the constraints of our current healthcare system. ”

Gender and ethnicity in diagnosis

It was felt that the personal characteristics of patients and clinicians, such as ethnicity and gender, could influence the diagnosis, and there was a recognition that women in particular were more likely to be told that their symptoms were psychosomatic. The data showed that male clinicians were statistically more likely to state that patients were exaggerating their symptoms. Patients were more likely than clinicians to say that their symptoms were directly caused by the disease.

Conclusion: Emphasize patient contribution in diagnosis

While the study authors acknowledge that patients’ reasoning is sometimes inaccurate, there are many potential benefits to incorporating patients’ “attributional insights” and experiences into decision-making (diagnostic accuracy, They concluded that there is a high likelihood that this will result in a reduction in misdiagnosis, an increase in patient satisfaction, etc. diagnosis. This comes at a time when it is widely known that diagnostic tests for neuropsychiatric lupus erythematosus, like many other autoimmune diseases and long-term COVID-19 infections, are “not enlightening,” according to one neurologist. Especially important.

Lead study author Dr Tom Pollack, from the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, said: mistaken. However, especially when diagnostic tests are not advanced enough to consistently detect these diseases, evaluating both perspectives in combination can reduce misdiagnosis, improve clinician-patient relationships, and improve symptom reporting. There could be more trust and openness. ”

Reference: “Attribution of neuropsychiatric symptoms and prioritization of evidence in the diagnosis of neuropsychiatric lupus: A mixed methods analysis of patient and clinician perspectives from the international INSPIRE study” Melanie Sloan, Laura Andreoli, Michael S. Zandi, Rupert Harwood, Melvi Pitkanen, Sloan by Sam, Colette Barea, Eftalia Massu, Chris Whincup, Michael Bosley, Felix Norton, Mandeep Ubi, David Jayne, Guy Leszziner, James Brimicombe, Wendy Dement, Kate Middleton, Caroline Gordon, David D’Cruz, Thomas A. Pollack, December 18, 2023, Rheumatology.
DOI: 10.1093/Rheumatology/kead685

This research was funded by The Lupus Trust and LUPUS UK.