Development of a conceptual model of patient-reported outcomes in light chain amyloidosis: a qualitative study.
Development of a conceptual model of patient-reported outcomes in light chain amyloidosis: a qualitative study.
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DOI：
10.1007/s11136-021-02943-w
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发表时间：
2022-04
期刊：
影响因子：
--
通讯作者：
Flynn KE
中科院分区：
文献类型：
--
作者：
D'Souza A;Myers J;Cusatis R;Dispenzieri A;Finkel M;Panepinto J;Flynn KE
轻链（AL）淀粉样变是一种浆细胞肿瘤，具有高早期死亡率和严重发病率，可导致严重残疾。我们从患者和经常照顾AL患者的卫生保健提供者的角度探讨了AL淀粉样变对症状和健康的影响。我们打算对AL淀粉样变性患者报告的结果进行概念性理解，以确定该疾病临床结果评估工具的使用背景和感兴趣的概念。对20名患者和10名专业人员进行了访谈。患者访谈记录了淀粉样变的频谱，包括从诊断到器官受累的时间、存在和接受的治疗类型。与专业人士的访谈包括医生、高级执业提供者、注册护士和患者倡导者；这些访谈涵盖了类似的主题。AL淀粉样变对患者生活的影响是多维的，具有高度主观的正常和意义感知。来自患者和专家的四个主要主题包括AL淀粉样变的诊断、AL淀粉样变患者的生活、症状负担和社会角色。专家还探讨了患者报告结果数据收集的障碍。这些主题提供了从AL淀粉样变患者和照顾AL淀粉样变患者的专业人员的角度全面了解症状负担的重要经历及其对日常生活的影响。这些发现进一步加深了对AL淀粉样变性临床结果评估工具的概念理解和初步概念模型的确定。
Light chain (AL) amyloidosis is a plasma cell neoplasm associated with high early mortality and severe morbidity that can cause severe disability. We explored the impact of AL amyloidosis on symptoms and well-being from the perspectives of patients and health care providers who regularly care for AL patients. We intended to develop a conceptual understanding of patient-reported outcomes in AL amyloidosis to identify the context of use and concept of interest for a clinical outcome assessments tool in this disease. Twenty patients and ten professionals were interviewed. Patient interviews captured the spectrum of amyloidosis experience including time from diagnosis, type of organ involvement, and presence and type of treatment received. Interviews with professionals included physicians, advanced practice providers, registered nurse, and a patient advocate; these interviews covered similar topics. The impact of AL amyloidosis on patients’ life was multidimensional, with highly subjective perceptions of normality and meaning. Four major themes from patients and experts included diagnosis of AL amyloidosis, living with AL amyloidosis, symptom burden, and social roles. Barriers to patient-reported outcomes data collection in patients were additionally explored from experts. The themes provide a comprehensive understanding of the important experiences of symptom burden and its impact on daily life from AL amyloidosis patients’ and from the perspectives of professionals who care for patients with AL amyloidosis. These findings further the conceptual understanding and identification of a preliminary model of concept of interest for development of a clinical outcome assessments tool for AL amyloidosis.
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影响因子：
3.2
作者：
Hsieh, HF;Shannon, SE
通讯作者：
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影响因子：
4.3
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