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Impact of Hereditary Angioedema on Patients

Mother and daughter hugging and smiling.

A diagnosis of hereditary angioedema (HAE) is very often delayed.1

HAE diagnostic delays and misdiagnoses2

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In a 2010 paper, patients saw an average of 4 different physicians before getting a diagnosis of HAE.3

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In a 2017 survey of 445 patients with HAE, people with HAE on average experienced a delay of 8.4 years in getting an accurate diagnosis.2

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Misdiagnoses may contribute to diagnostic delays and result in unnecessary treatments, potentially increasing the risk of death.4

HAE can impact a patient's life in a variety of ways

Burden of illness may include2,5:

  • Anxiety and depression
  • Dissatisfaction with care (perception of effectiveness, tolerability, and convenience of treatment)
  • Impairment of daily activities (work, education, and social)
  • Economic costs
  • Decreased health-related quality of life (physical, psychological, social, and somatic functioning and well-being)
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According to a 2017 self-reported survey of 445 patients with HAE, anxiety and depression are common comorbidities, affecting approximately 35% and 21% of patients, respectively. The severity of anxiety and depression worsened with more frequent HAE attacks.2 It's important to refer to a mental health specialist to help cope with anxiety and depression.

In the same survey, over the course of 1 year2:

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Approximately 13% of patients visited a hospital and stayed an average of 1 week (7.4 nights)

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Approximately 14% of patients required intubation following a laryngeal attack

The study was conducted by physicians and scientists from Massachusetts General Hospital, Research Triangle Park, and Shire.

References:

  1. Banerji A, Li Y, Busse P, et al. Hereditary angioedema from the patient's perspective: a follow-up patient survey. Allergy Asthma Proc. 2018;39(3):212-223. doi:10.2500/aap.2018.39.4123
  2. Banerji A, Davis KH, Brown TM, et al. Patient-reported burden of hereditary angioedema: findings from a patient survey in the United States. Ann Allergy Asthma Immunol. 2020;124(6):600-607. doi:10.1016/j.anai.2020.02.018
  3. Lunn ML, Santos CB, Craig TJ. Is there a need for clinical guidelines in the United States for the diagnosis of hereditary angioedema and the screening of family members of affected patients? Ann Allergy Asthma Immunol. 2010;104(3):211-214.
  4. Longhurst HJ, Bork K. Hereditary angioedema: an update on causes, manifestations and treatment. Br J Hosp Med (Lond). 2019;80(7):391-398. doi:10.12968/hmed.2019.80.7.391
  5. Banerji A. The burden of illness in patients with hereditary angioedema. Ann Allergy Asthma Immunol. 2013;111(5):329-336.