Background and Importance Hereditary angioedema (HAE) is a rare disease with a negative impact on patients' quality of life. Understanding the patient pathway would contribute to reducing the burden of the disease.
Aim and Objectives Understand the patient with HAE pathway by identifying and assessing the elements that comprise the burden of the disease of patients.
Material and Methods Descriptive study based on a bibliographic review and the expertise of a multidisciplinary panel of 18 professionals with knowledge and experience in HAE (Allergology, Immunology, Medical Emergency, Hospital Pharmacy, Nursing and Patient Associations). The patient pathway was elaborated by identifying the elements that comprise the burden of the disease. Those elements were evaluated from the patient’s and the healthcare system’s perspectives.
Results A patient with HAE suffers an average of 5.8 attacks per year, although there is great variability among patients. It has been estimated that 35% of patients take long-term prophylaxis (LTP).
The estimated average cost of a patient with HAE is €47,825/year, including pharmacological costs, admissions, medical appointments and procedures and indirect costs (transport and loss of productivity). Pharmacological treatment of LTP represents 79% of the total costs; however, it decreases the number of attacks by 76%, and therefore reducing the burden of disease.
In terms of lost productivity, it is estimated that a patient with HAE losses 2.5 days of work per year, although this varies depending on the treatment and situation. The loss of productivity associated with the loss of educational and professional opportunities and the emotional impact of HAE are important components of the burden of the disease.
The prescription of LTP in patients with a high number of attacks and the implementation of telepharmacy/telemedicine programs improves the quality of life, reduces visits to health care facilities and decreases sick leaves. The possibility of having the medication available at home for self-administration is an important benefit for patients and the healthcare system.
Conclusion and Relevance HAE has a high impact on patients and the healthcare system. Identifying the key elements at each stage of the patient pathway is essential to improve their quality of life while ensuring the sustainability of the healthcare system.
Conflict of Interest No conflict of interest
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