Gender and Ethnicity might Impact Diagnosis

In a paradigm shift within the medical community, experts are advocating for a greater emphasis on patients’ “lived experiences” following a comprehensive study led by the University of Cambridge and King’s College London.

The research, which involved over 1,000 patients and clinicians, uncovered instances where patient reports were undervalued, highlighting the need for a more collaborative and equal relationship between patients and healthcare professionals. 

The study, published in Rheumatology, focused on neuropsychiatric lupus, an incurable autoimmune disease known for its challenging diagnosis. The researchers examined the perceived value clinicians assigned to various types of evidence used in diagnoses, ranging from brain scans to patient self-assessments and observations from family and friends. 

Surprisingly, less than 4% of clinicians ranked patients’ self-assessments among the top three types of evidence. Clinicians tended to prioritize their own assessments, even though they acknowledged a lack of confidence in diagnosing conditions with often invisible symptoms such as headaches, hallucinations, and depression. These neuropsychiatric symptoms, when misdiagnosed, can lead to a lower quality of life and earlier mortality compared to visible symptoms like rashes. 

The study revealed a troubling trend, with patients feeling disbelieved and marginalized in healthcare settings. One patient expressed the frustration of being treated as if their symptoms were invalid, emphasizing the need for a safer and more inclusive environment.

The findings underscored the importance of reevaluating the traditional “doctor knows best” approach and moving towards a more collaborative model that values both patients’ lived experiences and clinicians’ expertise. 

Sue Farrington, Co-Chair of the Rare Autoimmune Rheumatic Disease Alliance, emphasized the urgency of embracing a more equal relationship between patients and doctors. She advocated for a departure from paternalistic attitudes, noting the potential dangers associated with disregarding patients’ insights. 

Nearly half of the patients surveyed reported never or rarely being asked for their self-assessments of their disease, highlighting a significant communication gap. However, some clinicians, particularly psychiatrists and nurses, recognized the value of patient opinions.

These clinicians appreciated the expertise patients brought to the table, acknowledging their role as expert diagnosticians in understanding their own conditions. 

Dr. Melanie Sloan, the lead author of the study, emphasized the critical need to listen to and value patients’ insights, particularly those with long-standing diseases. She also acknowledged the challenges within the current healthcare system, where time constraints limit the exploration of each patient’s symptoms thoroughly. 

The study shed light on the influence of personal characteristics such as ethnicity and gender on diagnosis. There was a perception that females were more likely to be told their symptoms were psychosomatic, and male clinicians were statistically more inclined to believe that patients exaggerated symptoms.

Recognizing these biases, the authors urged for a more nuanced approach that considers both patients’ and clinicians’ perspectives. 

While acknowledging that patient reasoning may be inaccurate at times, the study concluded that incorporating patients’ “attributional insights” into diagnostic decisions could yield numerous benefits.

These include improved diagnostic accuracy, fewer misdiagnoses, and enhanced patient satisfaction. This is particularly crucial in conditions like neuropsychiatric lupus, where diagnostic tests are often inconclusive. 

Dr. Tom Pollak, senior study author from King’s College London, highlighted the inherent challenges in accurately pinpointing the cause of symptoms. He emphasized the potential benefits of combining and valuing both patient and clinician views, especially in situations where diagnostic tests may fall short. 

In essence, the study advocates for a more patient-centered approach in healthcare, recognizing the invaluable contribution of patients’ lived experiences to the diagnostic process. By fostering a collaborative and equal relationship between patients and clinicians, the medical community can strive towards reducing misdiagnoses, building trust, and encouraging open communication in reporting symptoms. 

Journal Reference  

Melanie Sloan et al, Attribution of neuropsychiatric symptoms and prioritisation of evidence in the diagnosis of neuropsychiatric lupus: a mixed method study, Rheumatology (2023). DOI: 10.1093/rheumatology/kead685.