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中国有症状骨质疏松症患者在患者报告结局(PRO)项目中的生活经历与见解:中国西南部的一项质性现象学研究

Lived experiences and insights of Chinese patients with symptomatic osteoporosis on a patient-reported outcome (PRO) programme: a qualitative phenomenological study in Southwest China.

作者信息

Chen Yao, Zhang Yuehua, Zheng Qianlian, Sun Lei

机构信息

Department of Osteoporosis, West China School of Public Health and West China Fourth Hospital, Sichuan University, Chengdu, Sichuan, China.

Non-Communicable Diseases Research Center, West China-PUMC C. C. Chen Institute of Health, Chengdu, Sichuan, China.

出版信息

BMJ Open. 2025 Apr 3;15(4):e087480. doi: 10.1136/bmjopen-2024-087480.

Abstract

OBJECTIVES

To explore the lived experiences of patients with symptomatic osteoporosis on a patient-reported outcomes (PROs) programme for symptom management and quality of life (QoL) improvement.

DESIGN

This is a qualitative phenomenological study.

SETTING

PARTICIPANTS: 14 active participants in the PROs programme were recruited and interviewed through semi-structured face-to-face interviews. Colaizzi's seven-step method was employed for thematic analysis.

RESULTS

Four overarching themes and two sub-themes emerged, including (1) varied perceptions of the PROs programme, where some participants found it beneficial for tracking symptoms while others cited challenges such as technological barriers and lack of actionable outcomes; (2) PROs as a tool for enhancing communication and facilitating appointments by enabling more efficient doctor-patient interactions and quicker scheduling; (3) emotional support provided by regular doctor-patient communication, with sub-themes of fostering a sense of belonging and offering psychological comfort; and (4) limitations of remote communication, highlighting challenges in addressing complex medical needs and providing immediate solutions for medication adjustments.

CONCLUSIONS

PROs programmes facilitate symptom tracking, enhance communication and provide emotional support for patients with osteoporosis. However, limitations such as technological barriers and reliance on remote communication must be addressed. Ethical considerations, including potential over-reporting of symptoms to expedite care, require careful management. Future research should include patients who discontinue participating in the PROs programme prematurely and the perspectives of healthcare providers to provide a more balanced, comprehensive understanding.

摘要

目的

探讨有症状的骨质疏松症患者在一项患者报告结局(PROs)计划中的生活体验,该计划旨在进行症状管理和改善生活质量(QoL)。

设计

这是一项定性现象学研究。

背景

参与者:招募了14名PROs计划的积极参与者,并通过半结构化面对面访谈进行了采访。采用科莱齐的七步法进行主题分析。

结果

出现了四个总体主题和两个子主题,包括(1)对PROs计划的不同看法,一些参与者认为它有助于跟踪症状,而另一些人则提到了技术障碍和缺乏可采取行动的结果等挑战;(2)PROs作为一种增强沟通和促进预约的工具,通过实现更高效的医患互动和更快的日程安排;(3)定期医患沟通提供的情感支持,子主题包括培养归属感和提供心理安慰;(4)远程沟通的局限性,突出了在满足复杂医疗需求和提供药物调整即时解决方案方面的挑战。

结论

PROs计划有助于症状跟踪,增强沟通,并为骨质疏松症患者提供情感支持。然而,必须解决技术障碍和对远程沟通的依赖等局限性。包括可能为加快治疗而过度报告症状在内的伦理考量需要谨慎处理。未来的研究应纳入过早停止参与PROs计划的患者以及医疗服务提供者的观点,以提供更平衡、全面的理解。

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