Content validation and psychometric evaluation of the Angioedema Quality of Life Questionnaire for hereditary angioedema.

ABSTRACT:

Background

There is considerable burden of illness in hereditary angioedema (HAE). However, instruments to assess health-related quality of life (HRQoL) in HAE are limited. The Angioedema Quality of Life Questionnaire (AE-QoL) was developed to measure HRQoL in patients with recurrent angioedema; the validity of the AE-QoL in patients with HAE is described.

Methods

To identify disease-related experiences with a focus on the impact of HAE on HRQoL, interviews were conducted with a group of clinician experts and patients with HAE from Canada, France, Germany, Spain, the United Kingdom, and the United States, along with a targeted literature review. Concepts were mapped to the AE-QoL to assess item relevance, interpretation, and conceptual coverage. Cognitive interviews assessed

SUBMITTER: Vanya M 

PROVIDER: S-EPMC10070575 | biostudies-literature | 2023 Apr

REPOSITORIES: biostudies-literature