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. 2024 Jan;132(1):76-81.e2.
doi: 10.1016/j.anai.2023.10.011. Epub 2023 Oct 16.

Hereditary angioedema in older adults: Understanding the patient perspective

Alan P Baptist  1 , George E Freigeh  2 , Belinda Nelson  1 , Laurie Carpenter  1 , Nonie S Arora  3 , Rachel P Wettenstein  1 , Timothy Craig  4 , Marc A Riedl  5
Affiliations

Hereditary angioedema in older adults: Understanding the patient perspective

Alan P Baptist et al. Ann Allergy Asthma Immunol. 2024 Jan.

Abstract

Background: Hereditary angioedema (HAE) is a rare condition characterized by potentially fatal, recurrent episodes of painful swelling. Whereas there are limited studies evaluating the quality of life of individuals with HAE, none have evaluated the impact of HAE on older adults.

Objective: To evaluate the effect of HAE on older adults through qualitative methodology.

Methods: A group of 3 physicians with extensive research and clinical experience in HAE developed a focus group guidebook highlighting issues of importance to older adults. A total of 17 patients with HAE (type I or II) aged 60 years and older participated in focus groups. Three independent reviewers coded each focus group transcript using a thematic saturation approach.

Results: Reviewers identified 7 core themes from the focus groups. The themes identified encompassed the following: (1) challenges with securing medications and insurance concerns; (2) the experience of living with HAE before the advent of newer and more effective therapeutic options; (3) a worsening of HAE attack frequency and severity with aging; (4) the effects of comorbid conditions such as arthritis, memory loss, and irritable bowel syndrome; (5) changes in HAE with menopause; and (6) changing perspective on HAE with age, the effect of HAE on interpersonal relationships including the decision to have children, and goals for future care and research including support groups and a desire to be included in clinical trials.

Conclusion: Older adults with HAE have specific challenges and concerns that may be unique compared with younger populations. Health care providers should address these to provide optimal care.

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Conflict of interest statement

Disclosures Dr Baptist reports receiving research and consulting support from BioCryst and Takeda. Dr Craig reports research conflicts with BioMarin, Kalvista, Pharvaris, GlaxoSmithKline, CSL Behring, Takeda, Ionis, Intellia, AstraZeneca, Pfizer, Regeneron, and Grifols; speaking conflicts with Takeda, CSL Behring, and Grifols; is a consultant for BioMarin, Intellia, CSL Behring, Takeda, BioMarin, Ionis, AstraZeneca, Kalvista, CSL Behring, and BioCryst; has center designations from the International Hereditary Angioedema Association and Alpha-1 (HAE-A) Foundation; and is a member of the medical advisory board for the HAE-A. Dr Riedl reports receiving research support from BioCryst, BioMarin, CSL Behring, Ionis, Kalvista, Pharvaris, and Takeda; consulting fees from Astria, BioCryst, BioMarin, CSL Behring, Cycle, Intellia, Kalvista, Ono Pharma, Pharming, Pharvaris, and Takeda; honoraria for speaker presentations from CSL Behring, Pharming, and Takeda; and is a member of the US HAE-A medical advisory board. The other authors have no conflicts of interest to report.

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