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多发性硬化症中系统应用患者报告结局指标的提供者体验:一项定性子研究

Provider Experiences With Systematically Administered Patient-Reported Outcome Measures in Multiple Sclerosis: A Qualitative Sub-Study.

作者信息

Chu Nathan Y, Jamali Aila, Al Hamarneh Yazid N, Watson Kaitlyn E, Tsuyuki Ross T, Smyth Penelope S

机构信息

Faculty of Medicine and Dentistry, Division of Neurology, Department of Medicine, University of Alberta, Edmonton, Canada.

EPICORE, Faculty of Medicine and Dentistry, Department of Medicine, University of Alberta, Edmonton, Canada.

出版信息

Neurol Clin Pract. 2025 Aug;15(4):e200486. doi: 10.1212/CPJ.0000000000200486. Epub 2025 Jul 11.

Abstract

BACKGROUND AND OBJECTIVES

There has been interest in using patient-reported outcome measures (PROMs) to capture and systematically assess patients' perceptions of their multiple sclerosis (MS) experience and feed this information back to the clinician, but PROMs are not routinely used in MS outpatient clinics. We explored the perspectives of providers caring for persons with MS (PwMS) on the integration of PROMs into clinical practice.

METHODS

This was a qualitative substudy of a separate randomized controlled trial (ClinicalTrials.gov: NCT0497954) examining the effect of PROM use on depression and anxiety levels in PwMS. We conducted semistructured interviews with 10 providers caring for participants enrolled in the study and explored their experiences using PROMs with PwMS. Thematic analysis through a mixed inductive and deductive approach was performed using verbatim interview transcriptions.

RESULTS

Seven neurologists, 2 specialty MS nurse practitioners, and 1 MS registered nurse were interviewed. Providers expressed several facilitating factors with PROM usage, including engaging with patient-specific symptoms, initiating patient goal setting, and improving visit efficiency and patient satisfaction. However, providers also expressed barriers such as clinical workflow disruptions and technological barriers, skepticism toward the validity of results, and moral/ethical obligations to information gained from PROMs. Future opportunities elicited were the introduction of previsit PROMs and direct integration of PROMs into the electronic health record.

DISCUSSION

From an MS provider's perspective, PROMs offer useful information but barriers continue to exist. PROMs have promise as an adjunct tool in the care of PwMS to optimize their functioning and experiences as health care system users, and these results may inform future strategic implementation of routine PROMs in MS clinics.

TRIAL REGISTRATION INFORMATION

This trial was registered on July 28, 2021, at the NIH United States National Library of Medicine, ClinicalTrials.gov. Clinical Trial ID: NCT04979546.

摘要

背景与目的

人们一直对使用患者报告结局测量工具(PROMs)来获取并系统评估患者对自身多发性硬化症(MS)经历的看法,并将这些信息反馈给临床医生感兴趣,但PROMs在MS门诊诊所中并未常规使用。我们探讨了照顾MS患者(PwMS)的医护人员对将PROMs整合到临床实践中的看法。

方法

这是一项单独的随机对照试验(ClinicalTrials.gov:NCT0497954)的定性子研究,该试验考察了使用PROMs对PwMS抑郁和焦虑水平的影响。我们对10名照顾该研究参与者的医护人员进行了半结构化访谈,探讨了他们在对PwMS使用PROMs方面的经验。使用访谈逐字记录,通过归纳与演绎相结合的方法进行主题分析。

结果

访谈了7名神经科医生、2名MS专科执业护士和1名MS注册护士。医护人员表达了使用PROMs的几个促进因素,包括关注患者特定症状、启动患者目标设定以及提高就诊效率和患者满意度。然而,医护人员也表达了一些障碍,如临床工作流程中断和技术障碍、对结果有效性的怀疑以及对从PROMs获得的信息的道德/伦理义务。引出的未来机会是引入就诊前PROMs以及将PROMs直接整合到电子健康记录中。

讨论

从MS医护人员的角度来看,PROMs提供了有用的信息,但障碍仍然存在。PROMs有望作为辅助工具用于PwMS的护理,以优化他们作为医疗保健系统使用者的功能和体验,这些结果可能为未来在MS诊所常规使用PROMs的战略实施提供参考。

试验注册信息

该试验于2021年7月28日在美国国立医学图书馆美国国立卫生研究院的ClinicalTrials.gov上注册。临床试验标识符:NCT04979546。

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