Mitigating the Misdiagnosis Journey

Published April 16th, 2021 | 5 Minute Read

Receiving the correct diagnosis for a life-altering chronic condition can often be the most effective building block for a healthier, more manageable patient journey. In addition to yielding a mix of emotions – from relief to despair and everything in between – it opens the door to gaining knowledge about the condition, being able to connect with others with shared experiences, finding a compatible healthcare provider and, importantly, receiving the necessary treatments.

However, a misdiagnosis can greatly impact the life of a person living with a chronic health condition. Some may experience multiple misdiagnoses before they receive the correct one. People can experience symptoms for two months or two decades without being correctly diagnosed, leading to a slew of physical, emotional, mental and social health implications. Further understanding this impact on people living with chronic conditions creates an opportunity for the healthcare industry to consider ways to help improve the diagnosis process.

Of course, the diagnosis journey is often simpler for some conditions than others, especially those with symptoms that are more generally known by a wide array of HCPs and patients. However, findings across Health Union’s large-scale, syndicated, condition-specific In America surveys – conducted regularly for all of the company’s online health communities – show misdiagnosis is a common occurrence for many conditions. For example:

  • Nearly half of IBD In America 2020 respondents living with Crohn’s disease said they were previously misdiagnosed
  • 42% of Ankylosing Spondylitis/Axial Spondyloarthritis In America 2020 respondents previously received incorrect diagnoses
  • 36% of Multiple Sclerosis In America 2020 respondents had previously received misdiagnoses

Further analysis of these findings helps to identify some of the most common misdiagnoses and contributing factors. Pairing this data with perspectives from individuals engaging with these communities gives the healthcare industry further insight into the deep emotional and life-altering implications a delayed diagnosis journey can have on patients.

How Misdiagnosis Occurs

A number of factors can contribute to how misdiagnosis occurs, and it can vary significantly based on the condition and the individual patient.

Often, a patient might experience symptoms but not know what to do next or how to describe them. Without the necessary tools, resources and knowledge that come with having a diagnosis, one specific symptom could appear to be representative of dozens of conditions. Or symptoms might surface in a way that might only be identifiable by a specialist.

However, people in this situation don’t always know what type of doctor to consult and rely on suggestions from friends and family and, importantly, referrals from other HCPs. For many patients, discussing symptoms with a primary care physician or in an emergency department or urgent care center is often the first step. These physicians make clinical determinations based on how the patient is presenting, but discussion and diagnosis from a specialist are ultimately required. These recommendations may or may not be correct, which can further extend the process.

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Some conditions appear to be especially predisposed to a longer diagnosis journey. For example, one-fifth of Ankylosing Spondylitis/Axial Spondyloarthritis In America 2020 respondents and one-tenth of Hidradenitis Suppurativa In America 2020 respondents saw at least 10 HCPs before being correctly diagnosed.

One patient advocate discussed having seen a mixture of urologists, gastroenterologists, orthopedists and podiatrists before finally being asked the question that would finally lead to her correct diagnosis after 20 years: “Have you ever seen a rheumatologist?” One patient advocate experienced a bevy of misdiagnoses throughout her childhood – including strains, sprains, tendonitis, chronic fatigue syndrome and Reiter’s syndrome – before being diagnosed at age 20 with rheumatoid arthritis.

There are multiple factors that can extend a patient’s journey toward the correct diagnosis, including low public awareness around certain conditions or symptoms, a lack of regional access to a relevant specialist and health insurance concerns. Some patients might be misdiagnosed because, on the surface, they don’t “fit the profile” for a certain condition, an experience often relayed by lung cancer patients who have never smoked.

Others have attributed aspects of their misdiagnosis journeys to HCPs who didn’t listen to patients’ concerns. A patient advocate explained that she was diagnosed with stress for six months and her HCPs “didn’t think anything of it” when she communicated to them that “my limbs and face kept going numb.” An patient advocate was told to take a pregnancy test when she was 16 although “that bridge hadn’t been crossed yet” and despite continuously “telling the doctor it wasn’t possible.”

The Multilayered Impact of Misdiagnosis

The most obvious impact of misdiagnosis is that a patient is delayed from receiving the treatment, resources, support and overall understanding needed for effective condition management. Depending on the condition, reversing the negative impact of a delayed misdiagnosis, if possible, can take a lot of time and effort.

However, misdiagnosis can also contribute to additional concerns that could have rippling effects throughout the patient journey. For some, in receiving an incorrect diagnosis, they are also forced to deal with the physical, mental and emotional preparation for a condition they don’t even have – not to mention the potential stigma and subsequent treatments they might unnecessarily endure.

For example, before receiving the correct diagnosis of hidradenitis suppurativa, one patient advocate explained, “Some doctors told me I had a rare blood disorder and would die and others told me I had a staph infection and could contaminate others.” An patient advocate explained how he was operated on for appendicitis because doctors “insisted it was necessary or I could die.” However, he woke up from surgery to find out he didn’t actually have appendicitis; instead, the surgeon informed him he had Crohn’s disease.

Misdiagnosis can also lead to patients losing trust in their HCPs or becoming skeptical about any diagnosis – including the correct one – or clinical guidance they might receive. Another patient advocate explained that, even after receiving her correct diagnosis, being misdiagnosed for 12 years made it difficult for her to trust her doctors. “Lots of us have anxiety around hospital appointments because of not feeling listened to or not being able to trust our medical team,” she said.

How Healthcare Companies Can Positively Impact the Diagnosis Journey

For healthcare companies, further understanding various aspects of the diagnosis journey and the implications of misdiagnoses can go a long way toward helping them develop relevant solutions, marketing campaigns and awareness initiatives.

For certain conditions, especially those with lower overall clinical awareness, it can be important to understand a number of factors, such as the more and less common experienced symptoms, how many HCPs are typically consulted before receiving the correct diagnosis and time spent between first experiencing symptoms and being diagnosed.

Importantly, understanding the various HCPs consulted for diagnoses can help healthcare companies make decisions about who to target communications. For example, three-fourths of Lupus In America 2020 respondents were diagnosed by either a rheumatologist or PCP. However, 5% were diagnosed by a dermatologist, 2% were diagnosed by a nephrologist; some were diagnosed by a range of other HCPs, including immunologists, neurologists, gastroenterologists and pulmonologists.

A deeper dive into the most common misdiagnoses could also be helpful. Certain misdiagnoses tend to be heavily condition-specific or square into a symptom or comorbidity of a specific condition. However, recent In America surveys reveal that there are a few that are prominent across multiple conditions. For example, fibromyalgia was given at some point as a diagnosis – whether incorrectly or correctly in addition to their surveyed diagnoses – for:

  • 35% of Rheumatoid Arthritis In America 2020 respondents
  • Nearly a quarter of Myasthenia Gravis In America 2021 respondents
  • 16% of Multiple Sclerosis In America 2020 respondents

Mental health concerns, including stress, depression, panic disorders and anxiety, are also prominent in the list of top misdiagnoses or additional diagnoses received for many conditions. Awareness continues to increase and stigma continues to decrease around these issues. However, In America data and perspectives from patient advocates within Health Union’s communities illuminate how mental health concerns can often lead to or be symptomatic of many conditions and how these concerns are often still undermined with categorizations of “just stress” or “a little anxiety.”

Engagement on Health Union’s growing portfolio of online health communities combined with large scale, patient-reported data from its syndicated In America surveys can offer unique insight and understanding into nuances of the patient journey experienced by different groups of patients. Learn more about Health Union’s custom media, marketing research and clinical services that can help you create smarter, more effective solutions for patients and caregivers.

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