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本文引用的文献

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Listening to the Patient Voice Adds Value to Cancer Clinical Trials.倾听患者声音为癌症临床试验增添价值。
J Natl Cancer Inst. 2022 Oct 6;114(10):1323-1332. doi: 10.1093/jnci/djac128.
2
Using item response theory to develop and refine patient-reported outcome measures.运用项目反应理论开发和完善患者报告结局测量量表。
Eur J Cardiovasc Nurs. 2022 Jun 30;21(5):509-515. doi: 10.1093/eurjcn/zvac020.
3
Symptom clusters and quality of life in ambulatory patients with multiple myeloma.门诊多发性骨髓瘤患者的症状群与生活质量
Support Care Cancer. 2022 Jun;30(6):4961-4970. doi: 10.1007/s00520-022-06896-9. Epub 2022 Feb 19.
4
What Is Multiple Myeloma?什么是多发性骨髓瘤?
JAMA. 2022 Feb 1;327(5):497. doi: 10.1001/jama.2021.25306.
5
Development of the Multiple Myeloma Symptom and Impact Questionnaire: A New Patient-Reported Outcome Instrument to Assess Symptom and Impacts in Patients With Multiple Myeloma.多发性骨髓瘤症状和影响问卷的制定:一种新的患者报告结局工具,用于评估多发性骨髓瘤患者的症状和影响。
Value Health. 2021 Dec;24(12):1807-1819. doi: 10.1016/j.jval.2021.06.010. Epub 2021 Aug 2.
6
Pathway to Precision Patient-Reported Outcomes.精准患者报告结局之路
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Quality of life analyses in patients with multiple myeloma: results from the Selinexor (KPT-330) Treatment of Refractory Myeloma (STORM) phase 2b study.多发性骨髓瘤患者的生活质量分析:来自 Selinexor(KPT-330)治疗难治性骨髓瘤(STORM) 2b 期研究的结果。
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Real time remote symptom monitoring during chemotherapy for cancer: European multicentre randomised controlled trial (eSMART).实时远程症状监测在癌症化疗中的应用:一项欧洲多中心随机对照试验(eSMART)。
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Trajectory of Symptoms in Patients Undergoing Autologous Stem Cell Transplant for Multiple Myeloma: A Population-Based Cohort Study of Patient-Reported Outcomes.自体造血干细胞移植治疗多发性骨髓瘤患者的症状轨迹:一项基于人群的患者报告结局的队列研究。
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多发性骨髓瘤患者报告结局评估工具。

Assessment tools for patient-reported outcomes in multiple myeloma.

机构信息

Department of Haematology, Sir Run Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou City, Zhejiang Province, China.

Department of Nursing, Sir Run Run Shaw Hospital, Zhejiang University School of Medicine, Hangzhou City, Zhejiang Province, China.

出版信息

Support Care Cancer. 2023 Jun 30;31(7):431. doi: 10.1007/s00520-023-07902-4.

DOI:10.1007/s00520-023-07902-4
PMID:37389673
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10313577/
Abstract

BACKGROUND

Patients with multiple myeloma experience severe symptom burden. Patient participation in self-reporting is essential as medical staff's assessment of patient symptom severity is often lower than patient self-reporting. This article reviews patient-reported outcome (PRO) assessment tools and their application in the field of multiple myeloma.

RESULTS

The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) is the universal patient-reported outcome assessment tool most frequently used to evaluate the life quality in people with multiple myeloma. Among the specific patient-reported outcome assessment tools, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Multiple Myeloma Module (EORTC QLQ-MY20), the Functional Assessment of Cancer Therapy-Multiple Myeloma (FACT-MM), and the M.D. Anderson Symptom Inventory-Multiple Myeloma Module (MDASI-MM) are the most widely used, with some scholars using the EORTC QLQ-MY20 as a calibration correlate for scale development. Most current assessment instruments were developed using classical measurement theory methods; future researchers could combine classic theory tests and item response theory to create scientific assessment instruments. In addition, researchers select the appropriate assessment tool based on the purpose of the study. They can translate high-quality assessment tools into different languages and consider applying them more often to assessing multiple myeloma patients. Finally, most existing PROs focus on measuring life quality and symptoms in people with multiple myeloma, with less research on outcomes such as adherence and satisfaction, thus failing to comprehensively evaluate the patient treatment and disease management.

CONCLUSIONS

Research has shown that the field of PROs in multiple myeloma is in an exploratory phase. There is still a need to enrich the content of PROs and develop more high-quality PRO scales for multiple myeloma based on the strengths and weaknesses of existing tools. With the successful advancement of information technology, PROs for people with multiple myeloma could be integrated with electronic information systems, allowing patients to report their health status in real time and doctors to track their condition and adjust their treatment, thereby improving patient outcomes.

摘要

背景

多发性骨髓瘤患者的症状负担严重。患者参与自我报告至关重要,因为医务人员对患者症状严重程度的评估往往低于患者的自我报告。本文综述了患者报告结局(PRO)评估工具及其在多发性骨髓瘤领域的应用。

结果

欧洲癌症研究与治疗组织生活质量核心问卷 30 项(EORTC QLQ-C30)是最常用于评估多发性骨髓瘤患者生活质量的通用患者报告结局评估工具。在特定的患者报告结局评估工具中,欧洲癌症研究与治疗组织癌症治疗功能评估-多发性骨髓瘤量表(EORTC FACT-MM)和安德森症状评估-多发性骨髓瘤模块(MDASI-MM)使用最为广泛,一些学者使用 EORTC QLQ-MY20 作为量表开发的校准相关物。目前大多数评估工具都是使用经典测量理论方法开发的;未来的研究人员可以结合经典理论测试和项目反应理论来创建科学的评估工具。此外,研究人员根据研究目的选择合适的评估工具。他们可以将高质量的评估工具翻译成不同的语言,并考虑更频繁地将其应用于评估多发性骨髓瘤患者。最后,大多数现有的 PRO 主要集中在测量多发性骨髓瘤患者的生活质量和症状,而对依从性和满意度等结果的研究较少,因此无法全面评估患者的治疗和疾病管理。

结论

研究表明,多发性骨髓瘤领域的 PRO 仍处于探索阶段。仍有必要根据现有工具的优缺点,丰富 PRO 内容,并为多发性骨髓瘤开发更多高质量的 PRO 量表。随着信息技术的成功进步,多发性骨髓瘤患者的 PRO 可以与电子信息系统集成,使患者能够实时报告其健康状况,医生可以跟踪其病情并调整治疗方案,从而改善患者的预后。