The Hazards of Misdiagnosis

Written by: Marie Chesaniuk, PhD

The Impact of Misdiagnosis

Sometimes healthcare providers get the diagnosis wrong. Nothing’s perfect, right? I’ll just seek a second opinion…just as soon as I can pay for one, and get the time off from work to attend another visit, right after I do all the research all over again to find another seemingly qualified professional to assess me, right after I wait months before their next new patient spot opens up… And in the meantime, I’ll do my best to manage…whatever this is that I’m dealing with. Maybe I’ll regress to the mean. Maybe I’ll decompensate and lose functioning while waiting. Will I be able to keep my job and stay out of the hospital long enough to get to this next assessment? Will I have it in me to do any of this a second time? This is a lot for an opening paragraph, but it’s just the tip of the iceberg for the impact of misdiagnosis.

Misdiagnosis is an issue that faces adults and children alike. One study of youth showed that 18% of anxiety disorder diagnoses were missed by clinicians. In a study of US veterans, given a diagnosis of ‘anxiety disorder not otherwise specified,’ a more specific diagnosis was warranted in 77% of cases. This led to undertreatment as people with less specific diagnoses were less likely to receive treatment. Among people with bipolar disorder, some present initially with a depressive episode and receive a misdiagnosis of MDD until (hypo)manic symptoms emerge later.

Social and demographic factors also figure in misdiagnosis. White children are more likely to be diagnosed with ADHD than black or Asian children. Similarly, late diagnosis of autism is more common among women and lower socioeconomic status individuals. 

The impact of misdiagnosis on people is real. Misdiagnosis can lead to delays in appropriate treatment, increased hospitalization and relapse (particularly in bipolar disorder), and, in some cases of Avoidant/Restrictive Food Intake Disorder (ARFID) and eating disorders, dangerous weight loss without appropriate intervention. Misdiagnosed individuals might be prescribed unnecessary and/or harmful medications or behavioral interventions. 

Misdiagnosis can negatively impact the therapeutic relationship, making the client feel fundamentally misunderstood or even misled by the therapist, hurting trust not only in that particular therapist, but potentially in all therapists and therapy more generally. Laboring under the wrong treatment can leave clients with the impression that therapy doesn’t work for them or that they are hopeless and cannot recover even with treatment. 

Starting with an incorrect diagnosis leads to incorrect case conceptualizations and incorrect – or at least incomplete – treatment plans. Incorrect psychotherapy and medication can lead the client to develop a confused or inaccurate sense of themselves and, in some cases, an inaccurate sense of reality. And more importantly, the wrong treatment is unlikely to resolve all the symptoms or challenges the client is hoping to improve. At best, inappropriate or incomplete treatment leads to incomplete resolution of symptoms. At worst, inappropriate or incomplete treatment could be harmful and lead to decreased functioning.

A Million Ways to Get it Wrong

There are a number of types of misdiagnosis to be aware of.

• Delayed Diagnosis: A diagnosis is made later than it should be. One example of this is that many people with autism and attention deficit hyperactivity disorder (ADHD) initially receive an ADHD diagnosis, but not an autism diagnosis, leading to delays in receiving support for autism and confusion about oneself and one’s response to treatment.

• Diagnostic Overshadowing: All symptoms are misattributed to one diagnosis, when more than one diagnosis is at work. This term originated as a way to describe symptoms and entire disorders being misattributed to intellectual disability when they might be due to an anxiety disorder that a person has in addition to intellectual disability.

• Medical Mimic (or Underlying Medical Conditions): Symptoms are caused by an underlying medical condition, not a mental health disorder. Hypothyroidism, for example, can present similarly to depression.

• Misdiagnosis (AKA Incorrect Diagnosis or Wrong Diagnosis): When a wrong diagnosis is given in place of the correct one. Among women with autism, the most common perceived misdiagnosis is a personality disorder.

• Mislabeling Overlapping Conditions: A common cause of mental health misdiagnosis is due to overlapping symptoms across multiple conditions. Trouble sleeping? Changes in appetite? An increase in negative thoughts and feelings? That could be depression or anxiety, and they are often confused for one another when many people have both.

• Missed Diagnosis: A condition is overlooked or missed entirely. NAMI (National Alliance on Mental Illness) estimates that less than 50% of US adults with mental illness received treatment in 2021. 

How do we reduce the rate of mental health misdiagnosis?

One source of mental health misdiagnosis is time pressure. In some settings, like an emergency room, this is difficult to mitigate. But in many settings, we have the time to devote to a thorough assessment and, if needed, make revisions on preliminary diagnoses as we gather more data and get to know a client better. Another opportunity is by adjusting how clinicians arrive at a diagnosis. One randomized study had nearly 500 clinicians assign diagnoses based on vignettes. The group of clinicians using checklists to facilitate their diagnostic assessments arrived at fewer false-positive diagnoses of major depressive disorder, generalized anxiety disorder, and borderline personality disorder, but the checklist also led to missing cases of major depressive disorder. Thus, using checklists and validated screeners alone won’t solve the problem. 

Another study randomized over one hundred mental health clinicians to one of two education groups: a group that received education about pediatric bipolar disorder and another group that received education about cognitive biases and ways to correct for them. Given a set of vignettes to diagnose, the de-biasing group members gave more accurate diagnostic impressions and made fewer errors. This suggests that knowledge of psychopathology alone is insufficient to mitigate misdiagnosis: clinicians must know how to correct their own biases. Other research used a team approach to decrease misdiagnosis diagnosis, wherein a diagnosis was arrived at via medical record review, an intake SCID interview, and a team discussion to reach a diagnostic consensus. But this is only feasible if a setting has sufficient members to create a team and if the dynamic is safe for team members to respectfully challenge one another’s diagnosis.

Takeaways

Misdiagnosis is a multi-faceted and often harmful, disorienting, and disappointing part of many people’s healthcare journeys. It can lead to broken trust, confusion about how people think about themselves and their experiences of the world, and misleads people about what strategies are or are not helpful for managing what life throws at them. Every clinician wants to get it right for their clients. Keeping the factors that lead to misdiagnosis in mind and taking steps to mitigate them helps us get it right. What will you do to mitigate misdiagnosis in your work?

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