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晚期胰腺癌患者对患者报告结局(PROs)管理的生活体验:中国西南地区的一项质性现象学研究

Lived experiences of patients with advanced pancreatic cancer on patient-reported outcomes (PROs) management: a qualitative phenomenological study in Southwest China.

作者信息

Chen Ping, Hou Wanting, Li Changlin, Liang Qingyue, Ma Li, Zhao Xiumei, Yi Cheng

机构信息

Department of Oncology, Chengdu Seventh People's Hospital (Affiliated Cancer Hospital of Chengdu Medical College), Chengdu, Sichuan, China.

Division of Abdominal Tumor Multimodality Treatment, Cancer Center, West China Hospital, Sichuan University, Chengdu, Sichuan, China.

出版信息

BMJ Open. 2025 Jan 28;15(1):e084259. doi: 10.1136/bmjopen-2024-084259.

DOI:10.1136/bmjopen-2024-084259
PMID:39880447
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11781101/
Abstract

OBJECTIVES

To explore the lived experiences of patients with advanced pancreatic cancer enrolled in a patient-reported outcomes (PROs) management programme and to preliminarily understand how PROs management influences various aspects of patient care and overall quality of life.

DESIGN

A qualitative phenomenological study.

SETTING

A national cancer care centre in Southwest China specialised in cancer care, with a comprehensive PROs management programme.

PARTICIPANTS

15 participants diagnosed with advanced pancreatic cancer.

RESULTS

Five key themes emerged from our interviews, including enhanced communication with healthcare providers, attributed to the structured nature of PROs; increased perceived sense of care, with patients feeling more valued and heard; PROs management facilitated better treatment decision-making, with patients feeling more involved and empowered; improved communication with family members, aiding in better understanding and support; and varied perceptions of the impact on quality of life, with some noting improvements in specific aspects like symptom management, while others were uncertain about the overall benefit.

CONCLUSIONS

PROs management plays a significant role in improving communication between patients with advanced pancreatic cancer and their healthcare providers, enhancing patients' involvement in treatment decisions, and potentially improving family dynamics. However, the impact of PROs management on the overall quality of life of patients remains complex and individualised. The findings suggest that further research with a more diverse patient population is needed to fully understand the implications of PROs management in advanced cancer care.

摘要

目的

探讨参与患者报告结局(PROs)管理项目的晚期胰腺癌患者的生活体验,并初步了解PROs管理如何影响患者护理的各个方面及总体生活质量。

设计

一项质性现象学研究。

背景

中国西南部一家专门从事癌症护理的国家级癌症护理中心,拥有全面的PROs管理项目。

参与者

15名被诊断为晚期胰腺癌的参与者。

结果

我们的访谈中出现了五个关键主题,包括由于PROs的结构化性质而增强了与医疗服务提供者的沟通;增强了感知到的关怀感,患者感觉更受重视且意见得到倾听;PROs管理促进了更好的治疗决策,患者感觉更有参与感且更有自主权;改善了与家庭成员的沟通,有助于更好地理解和支持;以及对生活质量影响的不同看法,一些人指出在症状管理等特定方面有所改善,而另一些人对总体益处不确定。

结论

PROs管理在改善晚期胰腺癌患者与其医疗服务提供者之间的沟通、增强患者对治疗决策的参与度以及潜在改善家庭关系方面发挥着重要作用。然而,PROs管理对患者总体生活质量的影响仍然复杂且因人而异。研究结果表明,需要对更多样化的患者群体进行进一步研究,以充分了解PROs管理在晚期癌症护理中的意义。

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Electronic Patient-Reported Outcome Monitoring to Improve Quality of Life After Joint Replacement: Secondary Analysis of a Randomized Clinical Trial.电子患者报告结局监测对改善关节置换术后生活质量的作用:一项随机临床试验的二次分析。
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Clinical Practice Guidelines for Pancreatic Cancer 2022 from the Japan Pancreas Society: a synopsis.2022 年日本胰腺学会《胰腺癌临床实践指南》概要
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The Reporting, Use, and Validity of Patient-Reported Outcomes in Multiple Myeloma in Clinical Trials: A Systematic Literature Review.临床试验中多发性骨髓瘤患者报告结局的报告、使用及有效性:一项系统文献综述
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Implementation of thyroid-related patient-reported outcomes in routine clinical practice.在常规临床实践中实施甲状腺相关患者报告结局。
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