Hereditary angioedema (HAE) is a disease that, due to its rare nature, can pose difficulties for both patients and medical professionals. A new survey of allergists/immunologists from the American College of Allergy, Asthma and Immunology (ACAAI) shows that diagnosing, treating and managing this condition can be challenging for patients and healthcare providers—including patients in rural areas. An article about the survey is published in Annals of Allergy, Asthma and Immunology.
HAE is caused by a genetic mutation, and there are different types. It is a hereditary disease. The symptoms of HAE include sudden swelling, most commonly in the limbs, face, intestinal tract, and airway. Swelling of the airway can be life-threatening. Allergists and immunologists are specialists who can help diagnose and treat HAE patients.
Treatment of HAE involves both on-demand therapy, which is used to minimize the effects of an HAE attack, and prophylactic treatment, which is used in appropriate patients to reduce the frequency and severity of attacks.
The survey was conducted by The Harris Poll on behalf of ACAAI. Survey participants were recruited by email from ACAAI's member mailing list. A total of 2,996 members were contacted and asked to complete an online survey.
To be eligible for the survey, participants had to be an association member (physician or allied health professional) in the United States who was currently practicing allergy or immunology and seeing or treating at least one patient with HAE each year. The 138 members who responded saw an average of nine patients with HAE yearly. Due to the small sample size across urbanicity (n<100), results should be interpreted as directional only.
"More than a tenth (12%) of the allergist/immunologist respondents had patients who lived in rural areas," said allergist J. Allen Meadows, MD, ACAAI past president and corresponding author of the article. "It is significant that respondents with HAE patients living in rural areas (compared with urban or suburban) were more likely to say half or more must travel an hour or more to get to their practice—highlighting a potential barrier to care," said Dr. Meadows.
Other findings of the survey included:
The authors of the paper urged the following calls to action:
In conclusion, the authors state, "Awareness and education remain a great need for all rare diseases. Fifty percent of our respondents agreed that patient education and support groups could better support the treatment of patients in rural settings. We applaud our fellow providers for their efforts to educate patients with HAE and their families."
More information: J. Allen Meadows et al, Challenges in the management of hereditary angioedema in urban and rural settings, Annals of Allergy, Asthma & Immunology (2023). DOI: 10.1016/j.anai.2023.03.005
Citation: Survey of allergists/immunologists reveals management of hereditary angioedema differs by region (2023, April 5) retrieved 5 April 2023 from https://medicalxpress.com/news/2023-04-survey-allergistsimmunologists-reveals-hereditary-angioedema.html
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