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Adaptation and Linguistic Validation of Angioedema PROMs in Latvian for Assessing Recurrent Angioedema
Lāsma Lapiņa1,2,3, Adīne Kaņepa1,2, Maksims Zolovs1,4
1Institute of Oncology and Molecular Genetics, Statistics Unit, Riga Stradiņš University, LV1007 Riga, Latvia.
Abstract:
Background: 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. Objectives: 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. Methods: 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. Results: 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. Conclusions: 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.
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