为什么以及如何选择皮肤科的患者报告结果测量指标?

IF 8.4 2区 医学 Q1 DERMATOLOGY Journal of the European Academy of Dermatology and Venereology Pub Date : 2024-09-25 DOI:10.1111/jdv.20261
Emilie Brenaut
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引用次数: 0

摘要

我饶有兴趣地阅读了 Pereira 等人1 的文章,文章从患者的角度分析了患者报告结果测量法(PROMs)评估瘙痒症的可接受性,并从医生的角度分析了其可感知的益处。近年来,PROMs 的数量不断增加,因此这一问题备受关注。作者的研究表明,PROMs 受到了患者的欢迎,其可接受性和相关性都很高,这对于关系和伦理方面都很重要。对于医生来说,其有用性和可行性取决于调查问卷。使用数字评分量表(NRS)测量瘙痒程度和使用皮肤病生活质量指数(DLQI)测量生活质量受损程度被认为最有利于临床常规工作。PROMs 是一种用于记录患者经历报告的工具,目前仍在争论是否应将其用于日常生活,使其成为未来不可或缺的工具,或者是否应将其用于临床研究,因为临床研究对 PROMs 的兴趣是显而易见的,使用 PROMs 也是必不可少的。一项系统性综述指出了 PROMs 的诸多益处:促进患者积极参与、改善会诊重点、提高护理质量、实现对患者结果的标准化监测以及改善患者与医生之间的关系。2 人们认为 PROMs 的局限性包括:会转移诊治重点、对护理产生不切实际的期望、抑制患者与医生之间的互动、缺乏有临床意义的信息以及不适合所有患者。Pereira 的研究1 评估了与瘙痒强度(NRS)、症状控制(Itch-Controlled Days,ItchCD)、生活质量(DLQI;5-瘙痒生活质量,5PLQ)和一般健康状况(EuroQol,EQ-VAS)有关的五个 PROMs。目前市面上有大量 PROMs,可分为不同类别:(1) 通用型,即可用于各种治疗领域的工具,如 EQ-VAS;(2) 皮肤科专用型,即皮肤科专用工具,可用于各种皮肤病,如 DLQI;(3) 疾病专用型,即只能用于特定皮肤病的工具,如 Prurigo Control Test (PCT)。3 首先,临床医生需要选择最适合其临床实践或临床试验以及疾病的 PROM。其次,他们必须考虑测量特性(如可靠性、有效性和反应性),并牢记没有理想的皮肤科专用 PROM。3, 4 PROM 应该有效、可靠、反应灵敏,而且简短、可解释、易获取。对于许多瘙痒性皮肤病,可以考虑使用疾病特异性 PROMs,如用于荨麻疹的荨麻疹控制测试(UCT)、用于瘙痒症的 PCT 或用于特应性皮炎的以患者为导向的湿疹测量(POEM)。总之,PROMs 有很多优点,但也有一些局限性,需要巧妙地融入研究和日常实践中。EB是礼来、UCB、杨森、利奥制药、勃林格殷格翰、艾伯维、吉利德、Almirall、安进和辉瑞的顾问委员会成员或发言人,是Galderma、赛诺菲、特瑞维、Incyte、艾伯维、礼来、阿斯利康、Almirall、Galderma和Dermira的研究员,并获得了诺华和礼来的差旅费资助。
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Why and how to choose patient-reported outcome measures in dermatology?

I read with great interest the article by Pereira et al.1 on the acceptability from the patients' perspective and perceived benefits from physicians' perspective of the patient-reported outcome measures (PROMs) to assess pruritus. As the number of PROMs has increased in recent years, this question is of great interest. The authors showed that PROMs are welcomed by patients, with high levels of acceptability and relevance, which is important for the relational and ethical aspects. For physicians, the usefulness and feasibility depended on the questionnaire. Measuring pruritus with the numerical rating scale (NRS) and the impairment of quality of life with the Dermatology Life Quality Index (DLQI) were considered the most beneficial in clinical routine.

PROMs are tools used to capture patients' reports of their experiences. It is still debated whether they should be used in everyday life and become an indispensable tool in the future, or whether their use should be reserved for clinical research, where their interest seems obvious and their use essential.

A systematic review identified many benefits for PROMs: promoting active patient involvement, improving the focus of consultations, improving the quality of care, enabling standardized monitoring of patient outcomes and improving the patient-clinician relationship.2 Perceived limitations included the ability of PROMs to shift the focus of consultations, create unrealistic expectations of care, inhibit patient-clinician interaction, lack clinically meaningful information and not be suitable for all patients. The main disadvantage in daily practice is the time required to complete various questionnaires, but different tools can help clinicians, such as the use of mobile phones, tablets or computers, with possible completion before the consultation.

Pereira's study1 evaluated five PROMs, related to pruritus intensity (NRS), symptom control (Itch-Controlled Days, ItchCD), quality of life (DLQI; 5-Pruritus Life Quality, 5PLQ) and general health status (EuroQol, EQ-VAS). There are a large number of PROMs available today, which can be divided into different categories: (1) generic, that is an instrument that can be used across therapeutic areas, such as the EQ-VAS, (2) dermatology-specific, that is an instrument that is specific to dermatology and can be used across skin conditions, such as the DLQI and (3) disease-specific, that is an instrument that can only be used for a particular skin condition such as the Prurigo Control Test (PCT).3 First, clinicians need to select the most appropriate PROM, for their clinical practice or a clinical trial, and for the disease. Second, they have to consider the measurement properties (such as reliability, validity and responsiveness) and keep in mind that there is no ideal dermatology-specific PROM.3, 4 The PROM should be valid, reliable and responsive, but also short, interpretable and accessible.5 If the questionnaire has been validated in another language, a process of translation and validation is required.

In dermatology, PROMs are of particular interest in the assessment of pruritus when the symptom is isolated and there are no visible lesions, such as chronic pruritus without skin disease. For many pruritic skin conditions, the use of disease-specific PROMs can be considered, such as the Urticaria Control Test (UCT) for urticaria, the PCT for prurigo or the Patient-Oriented Eczema Measure (POEM) for atopic dermatitis. The rhythm of completion can be variable, regularly at each consultation, or only when the disease is not fully controlled and a change in treatment option is being discussed.

In conclusion, PROMs have many advantages but also some limitations and need to be integrated intelligently into research and daily practice. Good acceptance by patients is a positive finding.1

None.

EB is on the advisory board or speaker for Lilly, UCB, Jannsen, Leo Pharma, Boehringer Ingelheim, Abbvie, Gilead, Almirall, Amgen and Pfizer, investigator for Galderma, Sanofi, Trevi, Incyte, Abbvie, Lilly, AstraZeneca, Almirall, Galderma and Dermira and has received travel support from Novartis and Lilly.

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来源期刊
CiteScore
10.70
自引率
8.70%
发文量
874
审稿时长
3-6 weeks
期刊介绍: The Journal of the European Academy of Dermatology and Venereology (JEADV) is a publication that focuses on dermatology and venereology. It covers various topics within these fields, including both clinical and basic science subjects. The journal publishes articles in different formats, such as editorials, review articles, practice articles, original papers, short reports, letters to the editor, features, and announcements from the European Academy of Dermatology and Venereology (EADV). The journal covers a wide range of keywords, including allergy, cancer, clinical medicine, cytokines, dermatology, drug reactions, hair disease, laser therapy, nail disease, oncology, skin cancer, skin disease, therapeutics, tumors, virus infections, and venereology. The JEADV is indexed and abstracted by various databases and resources, including Abstracts on Hygiene & Communicable Diseases, Academic Search, AgBiotech News & Information, Botanical Pesticides, CAB Abstracts®, Embase, Global Health, InfoTrac, Ingenta Select, MEDLINE/PubMed, Science Citation Index Expanded, and others.
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