
Groundbreaking Study Unveils the Long-Term Impacts of Misdiagnosing Chronic Diseases
University of Cambridge
In the realm of healthcare, a significant gap often exists between the perspectives of clinicians and patients. This gap can lead to the misdiagnosis of autoimmune diseases like lupus and vasculitis as psychiatric or psychosomatic conditions, resulting in profound and lasting impacts on patients. A study conducted by the University of Cambridge sheds light on this critical issue, revealing the far-reaching consequences of such misdiagnoses.
Unveiling the Hidden Damage
The study, which involved over 3,000 participants including both patients and clinicians, uncovered the long-term physical and mental health impacts of these misdiagnoses. Often termed as “in your head” by patients, these incorrect diagnoses can severely damage patients’ trust in healthcare services and their overall wellbeing.
The Complexity of Autoimmune Diseases
Autoimmune rheumatic diseases such as rheumatoid arthritis, lupus, and vasculitis are chronic inflammatory disorders that affect the immune system and can cause damage to organs and tissues throughout the body. These conditions are notoriously difficult to diagnose due to the wide range of symptoms, many of which are invisible, like extreme fatigue and depression.
Dr. Melanie Sloan from the University of Cambridge led the study, which explored patient-reported experiences from two large groups of over 1,500 patients each, along with in-depth interviews with 67 patients and 50 clinicians. The findings, published in Rheumatology, highlight the critical need for greater awareness among clinicians about the symptoms of these diseases.
The Human Impact of Misdiagnoses
Patients who experienced misdiagnoses reported higher levels of depression, anxiety, and lower mental wellbeing. One patient recounted, “A doctor told me I was making myself feel pain, and those words have stayed with me, causing anxiety and depression.”
Over 80% of patients said their self-worth was damaged, and 72% reported that the misdiagnosis still affected them even decades later. These patients also reported lower satisfaction with medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services. One patient shared, “It damaged my trust and courage in telling doctors about my symptoms. I even stopped taking my immunosuppressive medicine because of those words.”
Rebuilding Trust and Understanding
Dr. Sloan emphasized the need for better education for clinicians to consider autoimmune diseases earlier in the diagnostic process. While some doctors admitted the difficulty of diagnosing these conditions, they also acknowledged the importance of regaining patients’ trust. One GP from England noted, “They lose trust in anything that anyone says, and it’s challenging to convince them that something is okay when a previous doctor was wrong.”
There is hope for rebuilding trust, as one patient described a positive experience after confronting a clinician about being “gaslit.” The clinician responded with empathy and understanding, transforming the patient’s negative experience into a more positive one.
Moving Forward
Mike Bosley, an autoimmune patient and co-author of the study, stressed the importance of understanding the long-term mental and emotional harm caused by misdiagnoses. He called for clinicians to listen carefully to patients and recognize the unique presentations of autoimmune conditions to avoid long-lasting harm.
The study authors recommend several measures to improve support for patients with autoimmune rheumatological diseases. These include discussing previous misdiagnoses with patients, offering targeted support, and ensuring greater access to psychologists and talking therapies. Additionally, educating clinicians to consider systemic autoimmunity when assessing patients with multiple, seemingly unconnected symptoms can reduce the risk of misdiagnoses.
Professor Felix Naughton from the Lifespan Health Research Centre at the University of East Anglia emphasized, “Diagnosing autoimmune rheumatic diseases can be challenging, but with better awareness among clinicians, we can hopefully reduce the risk of misdiagnoses and lessen the impact on patients.”
This study underscores the importance of accurate diagnoses and empathetic communication in healthcare. By bridging the gap between clinicians and patients, we can improve outcomes and rebuild trust in the healthcare system.