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.

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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

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article

The adolescent experience of hereditary angioedema: a qualitative study of disease burden and treatment experience

April Foster, Lynne Broderick, Laura Tesler Waldman, Aaron Yarlas et al.
3 citations
Orphanet Journal of Rare Diseases
Coagulation, Bradykinin, Polyphosphates, and Angioedema
4.88
article

The adolescent experience of hereditary angioedema: a qualitative study of disease burden and treatment experience

April Foster, Lynne Broderick, Laura Tesler Waldman, Aaron Yarlas, Laura Bordone
article en
3 citations

Abstract

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.

Orphanet Journal of Rare DiseasesVol. 20(1)
Ionis Pharmaceuticals (United States) (US), IQVIA (United States) (US), Quality Research (US)
Ionis Pharmaceuticals
Good health and well-being
Openalex Percentile: Top 6%
Coagulation, Bradykinin, Polyphosphates, and Angioedema
4.88
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