I recently worked on an educational program on psoriatic arthritis (PsA) – an inflammatory condition triggered by the immune system. With symptoms that include joint pain, stiffness, and scaly patches, PsA is often misdiagnosed or diagnosed late. In the interim, patients suffer through wrong treatments that can cause harm without symptom relief.

Expert rheumatologists who chaired the PsA educational program – Dr. Haberman from the NYU Grossman School of Medicine and Dr. Karmacharya from Vanderbilt University Medical Center – explained that while there has been significant movement with treatments to relieve PsA symptoms, accurate diagnosis of this multi-domain condition is often challenging. This was exactly what we heard from our expert patient on the program. Ms. Cohen had to endure tests and treatments from multiple doctors before an accurate diagnosis was made followed by the right treatment plan that gave her some relief from her often-debilitating symptoms.

Integrating Patient Voice

It makes me wonder – how do patients find their voice when interacting with our healthcare system? Ms. Cohen is a well-spoken former educator who was able to advocate for herself and make the choice to switch doctors. But many among us are not in that position (consider literacy and language barriers) and may not be able to challenge a treatment to reduce the associated harm it can cause, including death. A study by Johns Hopkins researchers found that more than 795,000 Americans are either permanently disabled or die following a misdiagnosis.

In parallel to the patient and caregiver burden, diagnostic delays strain the healthcare system and raise healthcare costs.

A few solutions have been proposed to minimize these errors and reduce patient burden:

·      Including patients in decision making: seamless communication, including providing interpreters

·      Eliminating implicit bias through provider training and reviewing the use of race-based adjustments

·      Incorporating empathy education into the medical school curriculum

Have you had a lived experience with misdiagnosis or a delayed diagnosis? How was it ultimately resolved? Let us know!

Photo credit: Dmitriy Kievskiy from Pixabay

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