Assessment of the State of Health, Quality of Life and Expectations of Patients With Hereditary Angioedema

University Hospital, Grenoble314 enrolled

Overview

8 years after the establishment of the therapeutic education program and 14 years after the creation of the National Reference Center for Angioedemas (CREAK), it is necessary to make an inventory in 2021 on the disease experienced by the patient with an assessment the needs and expectations of HAE patients. This assessment would make it possible to see the evolution of these needs and to adjust the price for the overall cost of children and adults in France. It may also allow a comparison of the requests expressed during a similar survey in another French-speaking region such as Quebec. Main objective is to know the needs and the current satisfaction of the needs, with regard to the disease and the treatment of the targeted patients of hereditary angioedema (HAE)

Study Type

OBSERVATIONAL

Enrollment

314

Conditions

Hereditary Angioedema

Interventions

questionnaireOTHER

electronic questionnaire

Eligibility

Medical Language ↔ Plain English

Inclusion Criteria: * Patient with HAE with or without C1 inhibitor deficiency * Patient over 15 or parents of a child under 15 with HAE Exclusion Criteria: * Patient opposed to the use of their data or refusing to answer the questionnaire * Adult patients protected by law

Outcomes

Primary Outcomes

the needs and the current satisfaction of the needs, with regard to the disease and the treatment of patients with hereditary angioedema (HAE)

questionnaire To know the needs and the current satisfaction of the needs, with regard to the disease and the treatment of patients with hereditary angioedema (HAE)

Time frame: baseline

Secondary Outcomes

comparaison of results with quebec

Comparison of the results of the French questionnaire, only the questions adapted from the Quebec questionnaire, with the results of the Quebec survey conducted by Jean-Nicolas Boursiquot in 2018.