Angioedema quality of life questionnaire (AE-QoL) - interpretability and sensitivity to change

Abstract

BackgroundThe Angioedema Quality of Life (AE-QoL) is the first patient reported outcome measure developed for the assessment of quality of life (QoL) impairment in patients with recurrent angioedema (RAE). This study aimed to evaluate the clinimetric properties of the AE-QoL in Thai patients and to establish categories of QoL impairment assessed by the AE-QoL.MethodsThe validated Thai version of the Dermatology Life Quality Index (DLQI) and Patient Global Assessment of Quality of Life (PGA-QoL) were used to comparatively evaluate the Thai version of AE-QoL. Spearman correlations between the Thai AE-QoL and two other standard measurements (DLQI and PGA-QoL) were investigated to determine convergent validity. The Thai DLQI and PGA-QoL were used to categorize patients according to their QoL. Known-group validity of the Thai AE-QoL was later analyzed. The reliability of the Thai AE-QoL was investigated using Cronbach’s alpha and intraclass correlation. Three different approaches including the distribution method, receiver operating characteristic curve analysis, and the anchor based-method were used for the interpretability.ResultsA total of 86 patients with RAE with a median age of 38.0 ± 15.1 years (range 18–76) were enrolled. Of those, 76 patients (88%) had RAE with concomitant wheals, and 10 patients (11.6%) had RAE only. The AE-QoL assessed RAE-mediated QoL impairment with high convergent validity and known-groups validity, high internal consistency and test-retest reliability, and good sensitivity to change. Although the AE-QoL did not differentiate between patients with moderate and large effect as measured by PGA-QoL or DLQI in this study, AE-QoL total values of 0–23, 24 to 38, and ≥ 39 could define patients with “no effect”, “small effect”, and “moderate to large effect” of RAE on their QoL, respectively.ConclusionsThis study supports the validity and reliability of the Thai version of the AE-QoL, which is a very different language from the original version. Categories allow to classify the effect of RAE on patients’ QoL as “none”, “small”, and “moderate to large”. Further studies are needed to confirm the applicability of AE-QoL in other Asian populations”.

The global burden of chronic urticaria for the patient and society*

“…In patients who predominantly or only have angio‐oedema, the Angioedema Quality of Life Questionnaire is the PROM of choice (Table 3). 92–94 …”

“…In patients who predominantly or only have angio-oedema, the Angioedema Quality of Life Questionnaire is the PROM of choice (Table 3). [92][93][94] The Cholinergic Urticaria Quality of Life Questionnaire is the only available and validated CIndU-specific PROM, 95 but additional questionnaires for cold urticaria and symptomatic dermographism are under development.…”

Urticaria: Collegium Internationale Allergologicum (CIA) Update 2020

“…In patients with wheals (with or without angioedema), the Urticaria Activity Score (UAS) [42][43][44][45], the Chronic Urticaria Quality of Life Questionnaire (CU-Q2oL) [46][47][48][49], and the Urticaria Control Test (UCT) [50][51][52][53][54] are the PROMs of choice to measure disease activity, impact, and control, respectively. In patients with predominant angioedema (with or without wheals), the Angioedema Activity Score (AAS) [55,56], the Angioedema Quality of Life Questionnaire (AE-QoL) [57][58][59], and the Angioedema Control Test (AECT) [59] should be used ( Table 2).…”

Prophylactic Treatment in Hereditary Angioedema Is Associated with Reduced Anxiety in Patients in Leipzig, Germany

“…The questionnaire consists of 17 questions scoring from 1 (no impairment) to 5 (strong impairment). The total sum is converted to a linear 0-100 scale with 0 indicating no impairment and 100 a maximum impairment of quality of life [24].…”