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用于评估复发性血管性水肿的拉脱维亚语血管性水肿患者报告结局量表的改编与语言验证

Adaptation and Linguistic Validation of Angioedema PROMs in Latvian for Assessing Recurrent Angioedema.

作者信息

Lapiņa Lāsma, Kaņepa Adīne, Zolovs Maksims, Buttgereit Thomas, Kurjāne Nataļja

机构信息

Institute of Oncology and Molecular Genetics, Statistics Unit, Riga Stradiņš University, LV1007 Riga, Latvia.

Center of Clinical Immunology and Allegrology, Pauls Stradiņš Clinical University Hospital, LV1002 Riga, Latvia.

出版信息

J Clin Med. 2025 Feb 19;14(4):1375. doi: 10.3390/jcm14041375.

Abstract

Angioedema (AE) is a localized, non-pitting swelling affecting subcutaneous and/or submucosal tissues. Despite varying underlying mechanisms, AE significantly impacts patients' quality of life (QoL), which is closely linked to disease activity and control. This study aimed to translate and linguistically validate the angioedema activity score (AAS), angioedema control test (AECT), and angioedema quality of life (AE-QoL) questionnaires into Latvian, and to use these validated tools to assess disease activity, control, and quality of life within the study population. PROMs, including the AECT, AAS, and AE-QoL, underwent a standardized linguistic validation process. Patients with hereditary angioedema (HAE), mast cell-mediated angioedema (AE-MC), and angioedema of unknown origin (AE-UNK) were recruited from two separate studies conducted at Riga Stradiņš University. We enrolled 41 participants (90.2% women) with a mean age of 46.3 years. AE-MC was the most common (63.4%), followed by HAE (19.5%) and AE-UNK (17.1%). The mean AAS score was 15.8, with no significant differences regarding AE type, gender, or age. The mean AECT score was 8.29, revealing significant gender differences (women: 7, men: 13.5). The AE-QoL total score was 45.5, with significant gender differences in most domains. Strong correlations were found between AE-QoL scores and both AAS and AECT, highlighting the impact of both disease activity and control on QoL. The Latvian adaptation of the AAS, AECT, and AE-QoL questionnaires effectively assesses AE activity, control, and disease-related QoL. Our study reveals poor disease control, underscoring the need for tailored interventions and regular PROM evaluations, with the Latvian version of the AE-QoL questionnaire identifying five distinct domains compared to four in the original version.

摘要

血管性水肿(AE)是一种影响皮下和/或黏膜下组织的局限性、非凹陷性肿胀。尽管潜在机制各不相同,但AE会显著影响患者的生活质量(QoL),而生活质量与疾病活动和控制密切相关。本研究旨在将血管性水肿活动评分(AAS)、血管性水肿控制测试(AECT)和血管性水肿生活质量(AE-QoL)问卷翻译成拉脱维亚语并进行语言验证,并使用这些经过验证的工具评估研究人群中的疾病活动、控制情况和生活质量。包括AECT、AAS和AE-QoL在内的患者报告结局测量工具(PROMs)经历了标准化的语言验证过程。遗传性血管性水肿(HAE)、肥大细胞介导的血管性水肿(AE-MC)和不明原因的血管性水肿(AE-UNK)患者来自里加斯特拉迪纳斯大学进行的两项独立研究。我们招募了41名参与者(90.2%为女性),平均年龄为46.3岁。AE-MC最为常见(63.4%),其次是HAE(19.5%)和AE-UNK(17.1%)。AAS平均得分为15.8,在AE类型、性别或年龄方面无显著差异。AECT平均得分为8.29,显示出显著的性别差异(女性:7分,男性:13.5分)。AE-QoL总分是45.5,在大多数领域存在显著的性别差异。AE-QoL评分与AAS和AECT之间均存在强相关性,突出了疾病活动和控制对生活质量的影响。AAS、AECT和AE-QoL问卷的拉脱维亚语改编版有效地评估了AE活动、控制情况以及与疾病相关的生活质量。我们的研究揭示了疾病控制不佳的情况,强调了需要进行针对性干预和定期的PROM评估,拉脱维亚语版的AE-QoL问卷确定了五个不同领域,而原始版本为四个领域。

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