The adolescent experience of hereditary angioedema: a qualitative study of disease burden and treatment experience
Adolescents with HAE reported experiencing a range of symptoms that, when untreated, impacted their HRQoL in ways that are unique from adults. Further, participants reported that effective treatments (prophylactic and acute) inhibited symptoms and HRQoL impacts with minimal treatment burden. Findings from this study suggest that health care providers and clinical investigators should consider the unique HRQoL impacts experienced by adolescents when evaluating treatment benefit.
Authors
- April Foster (ORCID: https://orcid.org/0000-0002-9663-7510)
- Lynne Broderick (ORCID: https://orcid.org/0000-0001-8783-9877)
- Laura Tesler Waldman (ORCID: https://orcid.org/0000-0001-9968-7057)
- Aaron Yarlas
- Laura Bordone
Institutions
- Ionis Pharmaceuticals (United States) (US)
- IQVIA (United States) (US)
- Quality Research (US)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-01-10
- DOI
- https://doi.org/10.1186/s13023-025-03539-0
- Citations
- 3
- Primary Topic
- Coagulation, Bradykinin, Polyphosphates, and Angioedema
- Type
- article
- Field-Weighted Citation Impact
- 4.88
Funders
- Ionis Pharmaceuticals