The study has been designed as a French, multicentric survey study to obtain data to describe the burden of on-demand treatment for patients with hereditary angioedema (HAE). The online survey assesses various aspects of HAE and in particular the burden of HAE from the patients' and caregivers' perspectives.
The study has been designed as a French, multicentric survey study to obtain data to describe the burden of on-demand treatment for patients with hereditary angioedema (HAE). The study will also explore the burden related to the administration of intravenous or subcutaneous on-demand treatments. The study was designed to collect data concerning the burden of HAE in patients with HAE (during HAE attacks and between attacks) and in caregivers. The online survey will collect data to describe the characteristics of patients with HAE, the disease characteristics, details concern various aspects of HAE attacks, and the burden of HAE in patients and their caregivers.
Study Type
OBSERVATIONAL
Enrollment
300
CHU Grenoble Alpes
Grenoble, France
RECRUITINGTo describe the burden associated with the on-demand treatment of HAE attacks
The burden associated with the on-demand treatment of HAE attacks from the patient's and caregiver's perspective, will be described in terms of: * The frequency of HAE attacks. * The severity of HAE attacks. * Disease control. * Events that trigger the HAE attacks. * Frequency of injections for treating HAE attacks. * Delay in injections for treating HAE attacks. * Hospitalization for HAE attacks. * Impact on quality of life (during HAE attacks). * Impact on quality of life (between HAE attacks). * Social impact. * Financial impact. * Burden of the caregivers.
Time frame: The survey will focus on HAE attacks that have occurred within the last 12 months.
Use of on-demand treatments for HAE attacks
The survey will collect data to for the following: * To estimate the number of patients that delay or do not use injectable on-demand treatments for HAE. * To identify the reasons why patients, delay or do not use injectable on-demand treatments for HAE attacks. * To study the potential benefits of introducing an oral on-demand treatment for HAE attacks.
Time frame: The survey will focus on HAE attacks that have occurred within the last 12 months.
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