Department of Development and Regeneration, Skeletal Biology and Engineering Research Centre, KU Leuven, Leuven, Belgium; Rheumatology, University Hospitals Leuven, Leuven, Belgium.
Department of Development and Regeneration, Skeletal Biology and Engineering Research Centre, KU Leuven, Leuven, Belgium.
Semin Arthritis Rheum. 2024 Aug;67:152481. doi: 10.1016/j.semarthrit.2024.152481. Epub 2024 May 25.
Rheumatoid arthritis (RA) is characterized by intermittent flares of disease activity with a significant impact on patients' lives. However, distinguishing flare from daily symptom variation may be approached differently by patients and healthcare providers, potentially hampering shared decision-making when treating RA.
To provide a comprehensive overview of RA flare definitions reported in the published literature, and to compare these with patients' perceptions of the flare concept according to qualitative evidence.
A systematic search was conducted on August 30th, 2022, and updated on September 30th, 2023, for both quantitative and qualitative studies reporting "flare" or related terms in the context of RA. We searched the following databases: Pubmed, EMBASE, Web of Science, Cochrane Library, and CINAHL. Definitions of RA flare reported in quantitative studies were summarized descriptively. In parallel, a thematic synthesis of qualitative studies was performed to outline patients' views on the concept of flare, and to compare these with the currently used definitions.
Among 32,864 potentially eligible records, 304 studies were included, 5 of which used qualitative/mixed methods to study patients' perceptions of flare. Remarkably, 62 different definitions for RA flare were reported, with many studies reporting more than one. The most commonly used definitions (54 %) were based on disease activity indices, with DAS28-based definitions the most widely applied (84 %). For each of the disease activity indices, several different cutoffs to define flares were used. Various definitions based on physician report were applied in 24 % of cases, while patient-reported criteria represented only 15 % of the applied definitions. Thematic synthesis of the qualitative/mixed-methods studies highlighted the multidimensional impact of flares on patients' lives, resulting in five sequential overarching themes: "Living with RA: a balancing act", "Flare: a disturbance of this balance", "The biopsychosocial impact of flares", "Self-management: the first line of defense", and "Medical help: the last resort". In turn, these five themes were underpinned by a central theme of "Uncertainty and variability".
We found a striking heterogeneity regarding the conceptualization and measurement of RA flare in the published literature. Although qualitative evidence highlighted the considerable impact of flares on patients' wellbeing, the majority of reported flare definitions were not based on patient report. There is a need to bridge this gap by aligning patients' and healthcare professionals' views on what distinguishes a flare from acceptable symptom variability when living with RA.
类风湿关节炎（RA）的特点是疾病活动间歇性发作，对患者的生活有重大影响。然而，患者和医疗保健提供者可能以不同的方式区分发作和日常症状变化，这可能会妨碍 RA 治疗的共同决策。
提供已发表文献中报告的 RA 发作定义的综合概述，并根据定性证据比较这些定义与患者对发作概念的看法。
系统检索了 2022 年 8 月 30 日和 2023 年 9 月 30 日在 Pubmed、EMBASE、Web of Science、Cochrane Library 和 CINAHL 数据库中发表的关于 RA 背景下“发作”或相关术语的定量和定性研究，报告了“发作”或相关术语。定量研究中报告的 RA 发作定义进行了描述性总结。同时，对定性研究进行了主题综合，概述了患者对发作概念的看法，并将这些看法与当前使用的定义进行了比较。
在 32864 篇潜在合格记录中，有 304 项研究被纳入，其中 5 项研究使用定性/混合方法研究了患者对发作的看法。值得注意的是，报告了 62 种不同的 RA 发作定义，许多研究报告了不止一种。最常用的定义（54%）是基于疾病活动指数的，其中 DAS28 为基础的定义应用最广泛（84%）。对于每种疾病活动指数，都使用了几个不同的截止值来定义发作。以医生报告为基础的各种定义在 24%的病例中得到应用，而基于患者报告的标准仅占应用定义的 15%。定性/混合方法研究的主题综合突出了发作对患者生活的多维度影响，产生了五个连续的总体主题：“与 RA 共存：一种平衡行为”、“发作：这种平衡的干扰”、“发作对患者生活的影响”、“发作的心理社会影响”、“自我管理：第一道防线”和“医疗帮助：最后的手段”。反过来，这五个主题又由一个核心主题“不确定性和可变性”支撑。
我们发现，已发表文献中 RA 发作的概念化和测量存在显著的异质性。尽管定性证据突出了发作对患者健康的重大影响，但大多数报告的发作定义不是基于患者报告。需要通过使患者和医疗保健专业人员的观点相一致，来弥合这一差距，以便在与 RA 共存时区分发作与可接受的症状变化。
