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优先让患者参与患者报告结局测量——改善头痛护理的一种可行方法。

Prioritising patient involvement in patient reported outcome measures- a PROMising way to improve headache care.

作者信息

Gunasekera Lakshini, C Ray Jason, Kaul Neha, Butzkueven Helmut, Hutton Elspeth, J O'Brien Terence

机构信息

Department of Neurosciences, School of Translational Medicine, Monash University, Melbourne, Australia.

Department of Neurology, Alfred Health, Melbourne, Australia.

出版信息

J Headache Pain. 2025 Apr 9;26(1):72. doi: 10.1186/s10194-025-02019-x.

DOI:10.1186/s10194-025-02019-x
PMID:40205331
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11983965/
Abstract

BACKGROUND

The optimal management of migraine involves care strategies that reflect what matters most to patients. This usually involves an assessment of treatment efficacy with respect to headache reduction, safety of prescribed medications and overall patient satisfaction and/or improved quality of life. Traditionally, neurologists focus on objective measures such as monthly reductions to headache and migraine days from baseline. This is complemented with various patient reported outcome measures (PROMs) to quantify morbidity and treatment effect from the patient's perspective. We present a review of currently available headache specific PROMs to summarise the design, key attributes, response format, recall period and length of questionnaires.

METHODS

A literature search was conducted using OVID Medline, Embase and Cochrane Library. The search strategy involved: (satisfaction OR patient satisfaction OR efficacy OR effectiveness) AND (disability OR morbidity OR burden OR severity OR impact OR patient reported outcomes OR PROMs OR outcome measures OR MIDAS OR HIT6 OR HDI OR MSQ OR MIG-SCOG OR Eq. 5D OR WPAI OR PGIC OR quality of life or QOL) AND (migraine OR chronic migraine OR headache OR primary headache OR cephalalgia OR headache disorder). A total of 16,024 articles returned. Removal of duplicates (n = 111), title and abstract screening (n = 15,853) and subsequent full text analysis (n = 19), left 41 articles. Reviewer comments led to addition of further 3 articles to our review. In total, of 44 included articles there were 20 headache-specific PROMs analysed.

RESULTS AND CONCLUSION

Our findings show that there is a significant lack of patient involvement in creation of headache PROMs thus there may be a gap between perceived treatment efficacy from the perspective of neurologists and that of patients. We suggest future assessment of migraine treatment efficacy considers what is important to the patient as a priority, in an effort to improve satisfaction with care.

摘要

背景

偏头痛的最佳管理涉及反映患者最关心问题的护理策略。这通常包括评估治疗在减轻头痛方面的疗效、所开药物的安全性以及患者的总体满意度和/或生活质量的改善情况。传统上,神经科医生侧重于客观指标,如每月头痛和偏头痛天数相对于基线的减少情况。这辅以各种患者报告结局指标(PROMs),以便从患者角度量化发病率和治疗效果。我们对目前可用的头痛特异性PROMs进行综述,以总结其设计、关键属性、回答格式、回忆期和问卷长度。

方法

使用OVID Medline、Embase和Cochrane图书馆进行文献检索。检索策略包括:(满意度或患者满意度或疗效或有效性)与(残疾或发病率或负担或严重程度或影响或患者报告结局或PROMs或结局指标或MIDAS或HIT6或HDI或MSQ或MIG - SCOG或Eq. 5D或WPAI或PGIC或生活质量或QOL)与(偏头痛或慢性偏头痛或头痛或原发性头痛或头痛症或头痛障碍)。共检索到16,024篇文章。去除重复项(n = 111)、标题和摘要筛选(n = 15,853)以及随后的全文分析(n = 19)后,剩余41篇文章。审稿人的意见导致我们的综述又增加了3篇文章。总共,在44篇纳入文章中,分析了20种头痛特异性PROMs。

结果与结论

我们的研究结果表明,在创建头痛PROMs过程中患者参与度严重不足,因此神经科医生与患者所感知的治疗效果之间可能存在差距。我们建议未来偏头痛治疗疗效评估应优先考虑对患者重要之事,以提高护理满意度。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a843/11983965/11c544fe8bf4/10194_2025_2019_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a843/11983965/11c544fe8bf4/10194_2025_2019_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a843/11983965/11c544fe8bf4/10194_2025_2019_Fig1_HTML.jpg

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本文引用的文献

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2
The impact of primary headaches on disability outcomes: a literature review and meta-analysis to inform future iterations of the Global Burden of Disease study.原发性头痛对残疾结局的影响:一项文献综述与荟萃分析,为全球疾病负担研究的未来版本提供参考。
J Headache Pain. 2024 Mar 4;25(1):27. doi: 10.1186/s10194-024-01735-0.
3
Outcome measures for migraine: Measuring the impact of migraine and results of migraine treatment.
偏头痛的疗效评估指标:偏头痛的影响评估及偏头痛治疗结果。
Handb Clin Neurol. 2024;199:303-328. doi: 10.1016/B978-0-12-823357-3.00022-7.
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The impacts of migraine on functioning: Results from two qualitative studies of people living with migraine.偏头痛对功能的影响:两项偏头痛患者生活质量定性研究的结果。
Headache. 2024 Feb;64(2):156-171. doi: 10.1111/head.14664. Epub 2024 Jan 18.
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Phase II randomised placebo-controlled trial of sodium selenate as a disease-modifying treatment in chronic drug-resistant temporal lobe epilepsy: the SeLECT study protocol.硒酸钠作为慢性耐药性颞叶癫痫的疾病修饰治疗的 II 期随机安慰剂对照试验:SeLECT 研究方案。
BMJ Open. 2023 Oct 27;13(10):e075888. doi: 10.1136/bmjopen-2023-075888.
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Epilepsia Open. 2023 Dec;8(4):1608-1615. doi: 10.1002/epi4.12839. Epub 2023 Oct 11.
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Development of the functional assessment of migraine scale using a patient guided approach.采用患者指导方法开发偏头痛功能评估量表。
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