轻链(AL)淀粉样变患者的工作结果:来自三个患者队列的研究结果

IF 1.8 Q3 HEALTH CARE SCIENCES & SERVICES
Patient Related Outcome Measures Pub Date : 2021-12-15 eCollection Date: 2021-01-01 DOI:10.2147/PROM.S337676
Avery A Rizio, Kristen L McCausland, Michelle K White, Tiffany P Quock
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引用次数: 0

摘要

背景:轻链(AL)淀粉样变性是一种罕见的进行性疾病,影响许多器官和系统。心脏受累的患者死亡风险最高。本报告汇编了三个AL淀粉样变患者队列的研究结果,以了解就业模式和工作影响。方法:数据来自美国患者倡导组织招募的三个队列。队列1的患者完成了SF-36v2®健康调查(SF-36v2)、工作效率和活动障碍-特定健康问题(WPAI)问卷以及包含12个项目的堪萨斯城心肌病问卷(KCCQ-12)。采用多变量logistic回归研究工作影响(WPAI评分)与HRQoL (SF-36v2评分)之间的关系,并根据KCCQ-12评分估计的纽约心脏协会(NYHA)等级对心脏严重程度进行总结。研究总结了过去24个月内诊断为AL淀粉样变的患者在就业、缺勤和长期残疾方面的变化,并按NYHA分类(队列2)。研究结果通过患者访谈(队列3)进行了背景分析。结果:与工作相关的影响,尤其是生产力下降,在AL淀粉样变患者中很常见。WPAI评分与HRQoL显著相关(结论:AL淀粉样变患者,特别是那些疾病晚期的患者,在一系列与就业相关的结局中都会受到影响。这些发现强调需要更有效的治疗和干预措施,以改善功能和患者预后,同时减少与该疾病相关的间接费用。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Work Outcomes Among Patients with Light Chain (AL) Amyloidosis: Findings from Three Patient Cohorts.

Work Outcomes Among Patients with Light Chain (AL) Amyloidosis: Findings from Three Patient Cohorts.

Work Outcomes Among Patients with Light Chain (AL) Amyloidosis: Findings from Three Patient Cohorts.

Background: Light chain (AL) amyloidosis is a rare and progressive disease that affects myriad organs and systems. Patients with cardiac involvement have the highest risk of death. This report compiles findings across three cohorts of patients with AL amyloidosis to understand patterns of employment and work impacts.

Methods: Data came from three cohorts recruited through patient advocacy organizations in the US. Patients in Cohort 1 completed the SF-36v2® Health Survey (SF-36v2), the Work Productivity and Activity Impairments - Specific Health Problem (WPAI) questionnaire, and the 12-item Kansas City Cardiomyopathy Questionnaire (KCCQ-12). The relationship between work impacts (WPAI scores) and HRQoL (SF-36v2 scores) was investigated using multivariable logistic regression and summarized according to cardiac severity using New York Heart Association (NYHA) classes estimated from KCCQ-12 scores. Changes in employment, days of missed work, and long-term disability due to AL amyloidosis were summarized for patients diagnosed in the past 24 months and stratified by NYHA class (Cohort 2). Findings were contextualized using patient interviews (Cohort 3).

Results: Work-related impacts, especially reduced productivity, were common among patients with AL amyloidosis. WPAI scores were significantly related to HRQoL (p<0.05 for all models). Among patients with cardiac involvement, the greatest degree of work impacts was observed for those in NYHA class 3 or 4. Changes in employment, missed work, and long-term disability were common among newly diagnosed patients, especially among those in NYHA class 3 or 4. Patient interviews supported the survey findings; patients described absences, reduced productivity at work, and loss of employment due to the disease and its treatment.

Conclusion: Patients with AL amyloidosis, particularly those with more advanced disease, experience impacts across a range of employment-related outcomes. These findings highlight the need for more effective treatments and interventions which may improve functioning and patient outcomes, while reducing indirect costs associated with the disease.

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来源期刊
Patient Related Outcome Measures
Patient Related Outcome Measures HEALTH CARE SCIENCES & SERVICES-
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