The diagnosis and management of patients with hereditary angioedema (HAE) who reside in rural communities present particular challenges, according to findings from an online survey conducted in the United States and published in the Annals of Allergy, Asthma & Immunology.
The researchers sought to explore the experiences of allergy and immunology health care professionals in diagnosing and treating patients with HAE, including those who reside in rural locations. Between April 13, 2022, and May 3, 2022, they conducted an online survey among 2996 members of an allergy and immunology professional medical association.
To qualify for the survey, potential participants needed to be a member of the association (physician, fellow, or allied health professional member) in the United States and to currently be practicing allergy or immunology and seeing/treating at least 1 patient with HAE annually.
A total of 180 of the 2996 association members (6% response rate) accessed the link to the survey, with 138 of these individuals fulfilling the criteria for study inclusion and successful completion of the survey. Eighty of them were physician members, 48 were fellows, and 10 were allied health care professionals (ie, physician assistants or nurse practitioners).
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Survey respondents reported seeing a mean number of 9 patients with HAE annually. Overall, 79% of the patients were aged 18 to 64 years, 67% were female, and 53% had moderate disease severity. According to the respondents, 66% of their patients with HAE had type 1 disease, 15% had type 2 disease, and 19% had HAE C1nl-INH, previously known as type 3 HAE.
Almost all of the survey respondents (98%) concurred that challenges are involved in the diagnosis and management of patients with HAE. Since HAE is a rare disease, it is not always identified and diagnosed appropriately. Of the study respondents, 64% noted a lack of familiarity with HAE. Further, patients may not totally understand the symptoms of HAE, according to 41% of respondents, and thus may lack an awareness of the need for diagnosis, per 45% of respondents.
Misdiagnosis of symptoms was reported by 82% of respondents to be a challenge in the diagnosis of HAE. Genetic testing is available but can not test for all known variants, with a negative genetic test not ruling out HAE C1nl-INH.
An average of 12% of the respondents’ patients lived in a rural area. Interestingly, the 43 survey respondents who treated more than 5 patients with HAE yearly were more likely than the 95 study respondents who treated 1 to 5 patients with HAE annually to have patients who resided in a rural locale (22% vs 8%, respectively).
Of the respondents, 72% selected treatments that can be administered at home as a way in which to better support the treatment of HAE among patients who reside in rural settings.
Economic challenges involved in HAE treatment, including the cost of care, insurance coverage, and government insurance regulations, were reported as well. Lack of access to immunologists and allergists was noted to be a challenge by 43% of survey respondents.
“Misdiagnosis of symptoms, access to a specialist, and affording medications remain high-priority concerns among those surveyed and these obstacles are heightened for those living in rural areas,” the authors wrote. The survey results provide “a call to action for addressing several of these real challenges,” they concluded.
Meadows JA, Anderson J, Gower RG. Challenges in the management of hereditary angioedema in urban and rural settings: results of a US survey. Ann Allergy Asthma Immunol. Published online March 7, 2023. doi:10.1016/j.anai.2023.03.005