理解系统性红斑狼疮和器官损害患者疾病负担的概念模型的发展

IF 2.3 Q2 ECONOMICS
Lynne Broderick, Wen-Hung Chen, Roger Levy, April Mitchell Foster, Cindy Umanzor Figueroa, Kerry Gairy, Deven Chauhan
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引用次数: 0

摘要

背景:系统性红斑狼疮(SLE)是一种慢性自身免疫性疾病,可导致不可逆器官损伤(OD)。与无OD的SLE相比,描述OD患者负担的数据有限。目的:建立一个全面的概念模型,描述sled相关OD患者所经历的负担。方法:本定性研究分为三个阶段。首先,进行了有针对性的文献综述,以提供概念模型草案。其次,对关键意见领袖(kol)进行访谈,以评估概念模型草案并帮助形成患者访谈材料。第三,对来自美国各地不同人口背景的患者进行单独访谈,以收集他们对与sled相关的OD生活的看法。使用NVivo软件对kol和患者的概念启发访谈数据进行编码和分析,以确定sled相关OD的总体患者负担的关键概念。来自KOL和患者访谈的结果被用于最终确定概念模型。结果:kol强调SLE相关的OD比单独SLE的死亡率更高。与sled相关的吸毒过量的参与者(n = 40)在生活的四个方面受到了不利影响:身体、认知、社会心理功能、经济和工作相关的幸福感。所有参与者都描述了身体上的影响,通常会影响他们执行日常任务的能力。许多人还描述了认知功能的恶化。几乎所有的参与者都经历了情感上的影响,他们的人际关系和社会生活都受到了挑战,这是由于与sled相关的吸毒过量。此外,与slee相关的吸毒过量造成了经济负担,包括医疗费用增加。SLE相关的OD对患者生活质量的各个方面的影响比OD发展前的SLE更严重,更虚弱,包括在OD发展后日常生活活动的进一步限制。讨论:研究结果指导了一个全面概念模型的发展,该模型充分代表了SLE相关的OD患者的生活经历,强调了与单独SLE相比,OD的额外负担。结论:概念模型将为疾病管理的改进提供信息,这可能导致更好的患者预后,并有助于疾病负担的临床结果评估的发展。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Development of a Conceptual Model to Understand Disease Burden in Patients With Systemic Lupus Erythematosus and Organ Damage
Background: Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can lead to irreversible organ damage (OD). Data describing the patient burden of OD, as compared with SLE without OD, are limited. Objective: To develop a comprehensive conceptual model describing the burden experienced by patients living with SLE-associated OD. Methods: There were three phases to this qualitative study. First, a targeted literature review was conducted to inform a draft conceptual model. Second, key opinion leaders (KOLs) were interviewed to assess the draft conceptual model and help shape patient interview materials. Third, patients of different demographic backgrounds from across the United States were interviewed individually to gather their perspectives on living with SLE-associated OD. Data from concept elicitation interviews with KOLs and patients were coded and analyzed using NVivo software to identify the key concepts of the overall patient burden of SLE-associated OD. Findings from the KOL and patient interviews were used to finalize the conceptual model. Results: KOLs highlighted that SLE-associated OD carried a higher rate of mortality than SLE alone. Participants with SLE-associated OD (n = 40) experienced detrimental impacts across 4 areas of their lives: physical, cognitive, psychosocial functioning, and economic and work-related well-being. Physical impacts were described by all participants, often affecting their ability to perform everyday tasks. Many also described deterioration of cognitive functioning. Almost all participants experienced emotional impacts and challenges to their relationships and social lives resulting from living with SLE-associated OD. Additionally, SLE-associated OD imposed an economic burden including increased healthcare costs. SLE-associated OD had a more severe and debilitating impact on all aspects of the patient’s quality of life than SLE prior to OD development, including further limitations in activities of daily living after the development of OD. Discussion: Study findings guided the development of a comprehensive conceptual model that fully represents the patient experience of living with SLE-associated OD, highlighting the additional burden of OD when compared with SLE alone. Conclusions: The conceptual model will inform improvements in disease management, which may result in better patient outcomes and aid development of clinical outcome assessments of disease burden.
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