Department of Dermatology and Allergy, Allergie-Centrum-Charité, Charité - Universitätsmedizin Berlin, Berlin, Germany.
Allergy. 2012 Oct;67(10):1289-98. doi: 10.1111/all.12007. Epub 2012 Aug 23.
Recurrent angioedema is a frequent clinical problem characterized by unpredictably and rapidly occurring cutaneous and mucosal swellings. These swellings may be painful and/or disfiguring. Upper airway involvement can also lead to dyspnea and suffocation. Although the disease burden is high, there is currently no specific instrument to measure health-related quality of life (QoL) impairment.
To develop and validate the first symptom-specific tool to assess QoL impairment in recurrent angioedema patients, adhering to established methodological recommendations.
During the development phase, 29 questions (items) were generated. Subsequently, item reduction was performed by means of impact analysis and factor analysis as well as by checking for content and face validity. As a result, 17 items were selected and included in the final instrument, the Angioedema QoL Questionnaire (AE-QoL). AE-QoL was then tested for its validity, reliability, and influence factors.
One hundred and ten angioedema patients took part in the validation of AE-QoL. AE-QoL was found to have a four-dimensional structure as well as a valid total score. All of its four domains (functioning, fatigue/mood, fears/shame, food) showed good levels of internal consistency with Cronbach's alpha > 0.8. Test-retesting revealed a good reliability of the instruments total score and domain scores. Gender as well as the patients' self-rated disease activity was found to be predictors of the AE-QoL total score.
Angioedema Quality of Life Questionnaire is the first angioedema-specific QoL questionnaire. It is a short, valid and reliable instrument that may serve as a valuable tool in future clinical studies and in routine patient care.
复发性血管性水肿是一种常见的临床问题，其特征是皮肤和黏膜肿胀突然且迅速发生。这些肿胀可能会引起疼痛和/或畸形。上呼吸道受累也可能导致呼吸困难和窒息。尽管疾病负担很高，但目前没有专门的工具来衡量与健康相关的生活质量（QoL）受损情况。
开发和验证首个专门用于评估复发性血管性水肿患者 QoL 受损的症状特异性工具，该工具符合既定的方法学建议。
在开发阶段，生成了 29 个问题（项目）。随后，通过影响分析和因子分析以及检查内容和表面有效性来进行项目缩减。结果，选择了 17 个项目并包含在最终工具中，即血管性水肿 QoL 问卷（AE-QoL）中。然后对 AE-QoL 的有效性、可靠性和影响因素进行了测试。
有 110 名血管性水肿患者参与了 AE-QoL 的验证。发现 AE-QoL 具有四维结构和有效的总分。其所有四个领域（功能、疲劳/情绪、恐惧/羞耻、食物）的内部一致性均较好，克朗巴赫α>0.8。测试-再测试显示仪器总分和领域得分具有良好的可靠性。性别以及患者自我评估的疾病活动度被发现是 AE-QoL 总分的预测因素。
血管性水肿生活质量问卷是首个血管性水肿特异性 QoL 问卷。它是一种简短、有效且可靠的工具，可能在未来的临床研究和常规患者护理中发挥重要作用。
