Baptist Alan P, Freigeh George E, Nelson Belinda, Carpenter Laurie, Arora Nonie S, Wettenstein Rachel P, Craig Timothy, Riedl Marc A
Division of Allergy and Clinical Immunology, Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan.
Division of Allergy and Clinical Immunology, Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan.
Ann Allergy Asthma Immunol. 2024 Jan;132(1):76-81.e2. doi: 10.1016/j.anai.2023.10.011. Epub 2023 Oct 16.
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.
To evaluate the effect of HAE on older adults through qualitative methodology.
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.
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.
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.
遗传性血管性水肿（HAE）是一种罕见疾病，其特征为反复发作的疼痛性肿胀，可能危及生命。虽然评估HAE患者生活质量的研究有限，但尚无研究评估HAE对老年人的影响。
通过定性研究方法评估HAE对老年人的影响。
一组3名在HAE领域有广泛研究和临床经验的医生编写了一份焦点小组指南手册，突出对老年人重要的问题。共有17名60岁及以上的HAE（I型或II型）患者参加了焦点小组。三名独立评审员采用主题饱和法对每个焦点小组的记录进行编码。
评审员从焦点小组中确定了7个核心主题。确定的主题包括：（1）获取药物的挑战和保险问题；（2）在更新、更有效的治疗方案出现之前HAE患者的生活经历；（3）随着年龄增长HAE发作频率和严重程度的恶化；（4）关节炎、记忆力减退和肠易激综合征等合并症的影响；（5）绝经后HAE的变化；（6）随着年龄增长对HAE看法的改变、HAE对人际关系的影响（包括生育决定）以及未来护理和研究目标（包括支持小组和参与临床试验的愿望）。
与年轻人群相比，老年HAE患者有特定的挑战和担忧，可能是独特的。医疗保健提供者应解决这些问题以提供最佳护理。
