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 AnkylosingSpondylitis.net 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 RheumatoidArthritis.net 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 MultipleSclerosis.net 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 Endometriosis.net 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 HSDisease.com 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 InflammatoryBowelDisease.net 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 InflammatoryBowelDisease.net 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.