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遗传性血管性水肿发作对健康相关生活质量和工作生产力的影响。

Impact of hereditary angioedema attacks on health-related quality of life and work productivity.

作者信息

O'Connor Maeve, Busse Paula J, Craig Timothy J, Radojicic Cristine, Wedner H James, Danese Sherry, Ulloa Julie, Desai Vibha, Andriotti Tomas, Audhya Paul K, Christiansen Sandra

机构信息

Integrative Immunology Care, LLC, Charlotte, NC, USA.

Allergy, Asthma, & Immunology Research Institute, Charlotte, NC, USA.

出版信息

World Allergy Organ J. 2025 Jul 28;18(8):101083. doi: 10.1016/j.waojou.2025.101083. eCollection 2025 Aug.

Abstract

BACKGROUND

Hereditary angioedema (HAE) negatively impacts health-related quality of life (HRQoL). Few studies have characterized impairments to HRQoL, work productivity, and well-being during and following HAE attacks.

METHODS

Patients with ≥1 HAE attack in the previous 3 months were recruited by the United States (US) HAE Association (HAEA) to complete an online survey. Respondents were categorized into those who did (Treated Cohort) and did not (Untreated Cohort) manage their last attack with on-demand treatment (OD). Adapted versions of the EuroQol-Five Dimensions-Five Levels (EQ-5D-5L), EuroQol Visual Analogue Scale (EQ VAS), and Work Productivity and Activity Impairment-General Health assessments were used.

RESULTS

Attacks negatively impacted HRQoL and social and physical aspects of well-being in the Treated (N = 94) and Untreated (N = 20) Cohorts. In the Treated Cohort, mean EQ-5D-5L index score was 0.849 "Today" and 0.568 "During the last treated attack," with the latter score indicating substantial impairment in HRQoL. Mean EQ-5D-5L index scores trended lower as time to OD increased, with mean scores of 0.667 for those treating <1 h and 0.593-0.504 for those treating ≥1 to <8 h from attack onset. The percentage of patients with mild attacks decreased as time to OD increased (from 50% for those treating <1 h to 17-33% for those treating ≥1 h from attack onset), and mean EQ-5D-5L index scores decreased as attack severity increased (mild, 0.742; severe, 0.444). Generally, mean EQ VAS scores decreased as time to OD increased, from 60.1 in those treating <1 h to 53.3 in those treating ≥8 h from attack onset. In the week following attack onset, average levels of absenteeism, presenteeism, and overall work impairment were 15%, 35%, and 39%, respectively. Despite attacks being of milder severity, declines in HRQoL (mean EQ-5D-5L and EQ VAS scores "During the last attack": 0.661 and 73.0, respectively) and impairments in work productivity (mean level of absenteeism, presenteeism, and overall work impairment: 12%, 32%, and 36%, respectively) were also observed in the Untreated Cohort.

CONCLUSIONS

Late-treated and untreated attacks were associated with reduced HRQoL and work productivity, driven by attack severity. The negative impact of attacks may be reduced by increasing compliance with HAE guidelines (ie, consider OD for all attacks and treat as soon as possible), and by addressing barriers to OD in general and early treatment in particular.

摘要

背景

遗传性血管性水肿(HAE)对健康相关生活质量(HRQoL)产生负面影响。很少有研究描述HAE发作期间及之后对HRQoL、工作效率和幸福感的损害。

方法

美国HAE协会(HAEA)招募了在过去3个月内有≥1次HAE发作的患者来完成一项在线调查。受访者被分为使用按需治疗(OD)管理了上次发作的患者(治疗队列)和未进行管理的患者(未治疗队列)。使用了欧洲五维健康量表-5级(EQ-5D-5L)、欧洲视觉模拟量表(EQ VAS)的改编版本,以及工作效率和活动障碍-一般健康评估。

结果

发作对治疗队列(N = 94)和未治疗队列(N = 20)的HRQoL以及幸福感的社会和身体方面产生了负面影响。在治疗队列中,EQ-5D-5L指数的平均得分“今日”为0.849,“在上次治疗发作期间”为0.568,后一得分表明HRQoL有严重损害。随着OD治疗时间的增加,EQ-5D-5L指数的平均得分呈下降趋势,发作开始后治疗<1小时的患者平均得分为0.667,治疗≥1至<8小时的患者平均得分为0.593 - 0.504。轻度发作患者的百分比随着OD治疗时间的增加而下降(从发作开始后治疗<1小时的患者中的50%降至治疗≥1小时的患者中的17% - 33%),并且EQ-5D-5L指数的平均得分随着发作严重程度的增加而下降(轻度,0.742;重度,0.444)。一般来说,随着OD治疗时间的增加,EQ VAS的平均得分下降,从发作开始后治疗<1小时的患者中的60.1降至治疗≥8小时的患者中的53.3。在发作开始后的一周内,旷工、出勤但工作效率低下和总体工作受损的平均水平分别为15%、35%和39%。尽管未治疗队列中的发作严重程度较轻,但也观察到HRQoL下降(“在上次发作期间”EQ-5D-5L和EQ VAS的平均得分分别为0.661和73.0)以及工作效率受损(旷工、出勤但工作效率低下和总体工作受损的平均水平分别为12%、32%和36%)。

结论

延迟治疗和未治疗的发作与HRQoL降低和工作效率下降相关,这是由发作严重程度驱动的。通过提高对HAE指南的依从性(即对所有发作考虑OD并尽早治疗),以及解决OD的一般障碍尤其是早期治疗的障碍,可以减少发作的负面影响。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fbbd/12320545/0537f08a5bac/gr1.jpg

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