Patients with eosinophilic disorders express diagnosis dissatisfaction online
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SAN ANTONIO — Delayed and inaccurate diagnoses often plague patients with eosinophilic disorders, but online communities can help them cope, according to data presented at the American Academy of Allergy, Asthma & Immunology Annual Meeting.
“What are patients posting? What do they have to say about their conditions on publicly available social media websites?” Mary Jo Strobel, executive director of the American Partnership for Eosinophilic Disorders, told Healio.
The study
Between Jan. 1, 2019, and May 31, 2020, the researchers examined social media posts in English, French and German from patients with severe asthma with an eosinophilic phenotype (SEA), eosinophilic granulomatosis with polyangiitis (EGPA) and hypereosinophilic syndromes (HES).
“We were looking to gain insight into the diagnosis and misdiagnosis of these particular conditions and the impact that that had on patients,” Strobel said.
Health care professionals might not recognize these rare diseases, the researchers said, resulting in delays in diagnosis and treatment initiation and impacting both the physical and mental health of their patients.
“They’re seeing a number of specialists to arrive at diagnosis,” Strobel said. “With these rare diseases, we’re seeing those lengthy delays.”
The researchers found and received permission to publish 509 comments about SEA, 746 about EGPA and 39 for HES, which had fewer posts included due to difficulties in obtaining consent for publication.
Five key themes emerged in these posts, the researchers said: personal experience, seeking and giving advice, symptoms, diagnosis and treatments. Individual posts could touch upon more than one of these themes.
Personal experience accounted for the largest number of posts, including 87% of those from patients with SEA, 77% of those from patients with EGPA and 100% of those from patients with HES. Also, 18% of the comments from patients with SEA, 33% of those from patients with EGPA and 82% of those with HES pertained to diagnosis.
The researchers then classified these comments about diagnosis based on communication or lack of communication with health care providers (HCPs), lack of HCP understanding or empathy, miscommunication, delays in diagnosis, impact on quality of life and overuse of oral corticosteroids due to misdiagnosis or delayed diagnosis.
Verbatim responses
Among patients reporting a lack of communication, one patient with SEA said that other patients should ask to be referred elsewhere if they feel like they have had limited guidance in preventing asthma flares.
“They stopped basically all my meds. I then went home and had really bad issues for 2 months until they saw me again,” another patient with SEA reported.
A lack of empathy or understanding led one patient with SEA to get scared when the HCP suggested chronic obstructive pulmonary disorder as a diagnosis. Another patient said HCPs dismissed their spouse’s SEA as sinusitis or a cold.
“I actually diagnosed myself but my doctors wouldn’t believe I had EGPA because I’m young. They wouldn’t even admit I had asthma when I clearly did,” another posted.
Posts pertaining to miscommunication included one story from a patient with EGPA whose doctors said — 4 days before Christmas — that they had less than 6 months to live.
“Boy did they get this wrong,” the poster said.
Anecdotes about delays in diagnosis included one patient with SEA who endured nine life-threatening asthma attacks in a year before diagnosis, and another whose doctors pinned symptoms on Crohn’s disease when it was really Churg-Strauss syndrome. Yet another patient experienced delays that spanned decades.
“It took us almost 20 years, an entire team of specialists (and ultimately NIH) to have the science catch up to what was happening to me,” said a patient with HES.
Impacts on quality of life included more than missed work and missed recreational activities, the researchers also found.
“Drive to doctors and home to bed. That [was] my life too for almost 4 years,” one poster with EGPA wrote.
And as supportive as the HCPs had been, another patient with HES explained that they could not understand coping with complicated medical problems in addition to severe asthma.
“It’s more than a full-time job,” the poster wrote, “and often it’s an overwhelming one.”
Patients also expressed concerns about the side effects of the oral corticosteroids they were taking, although they also acknowledged their benefits, which Strobel called a “love-hate relationship.” One patient with HES admitted that, despite the side effects, the corticosteroids keeps pain minimal.
“That really sums up what many patients feel about oral corticosteroids,” Strobel said.
The researchers attributed these diagnoses to their difficulty.
“These are symptoms that are sometimes found in many other conditions. These specialists aren’t necessarily immediately thinking rare disease. Better awareness of these conditions among health care providers can shorten the diagnostic journey for patients,” Strobel said.
Doctors should keep these responses in mind as patients come to them with conditions that are difficult to diagnose, Strobel continued.
“Delays in diagnosis, or misdiagnosis, of eosinophil-driven diseases can prevent a patient’s timely access to appropriate treatments,” she said. “This in turn can further negatively impact a patient’s physical and mental well-being, and have significant impacts on their quality of life.”
Although these patients have endured delayed diagnoses and misdiagnoses, the researchers said, their ability to share their experiences online has enabled them to build a sense of community.
“Patients can be both comforted and empowered by interacting with others who live with the same disease and who have experienced similar journeys,” Strobel said. “Because these conditions aren’t as common as other diseases, patients often do not have local support from other patients. Digital social platforms provide the opportunity for people to connect, learn and share, no matter where they live.”