综合不同观点定义类风湿关节炎全面缓解的概念:SUMAR项目

Alejandro Balsa , José Luis Andreu , Juan Carlos Hermosa-Hernán , Josefa León-Navarro , Jordi Nicolas Pico , José Javier Pérez Venegas , Susana Romero-Yuste , Raimon Sanmarti , Antonio Ignacio Torralba Gómez-Portillo , Juan Carlos Valenzuela-Gámez , Jordi Cohen
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摘要

简介和目标:SUMAR项目旨在就类风湿关节炎(RA)患者缓解的概念达成共识,同时考虑到患者、卫生保健专业人员和卫生保健管理人员的不同观点。材料和方法:科学委员会由一名风湿病学家(担任国家协调员)、四名风湿病学家、一名初级保健医生、一名护士、两名医院药剂师、两名卫生保健管理人员和一名患者倡导小组成员组成。该研究从2020年到2021年分三个阶段进行:(1)275名患者、160名风湿病学家和31名卫生保健管理人员参与了对RA缓解的几个观点的分析;(2)缓解的综合定义,包括两个多学科研讨会,分别有11名和12名参与者;(3)在7个区域多学科会议上与多达200名与会者进行推广和传播。结果:缓解的概念在不同的环境和不同的利益相关者是异质的。人们一致认为,除了炎症活动外,缓解应包括疼痛和功能以及缓解的持续时间。对于参与者来说,缓解的定义取决于临床情况,无或有结构性损伤,前者寻求“正常化”的结果,后者避免进展。执行全面减免的概念被认为是不太可行的,执行的主要障碍是缺乏协商的时间和不同自治区间信息技术系统的差异。讨论与结论:缓解的定义不仅基于现有指标有无炎症活动的概念,还包括患者直接报告的与其健康和生活质量相关的变量。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Integrating different perspectives to define a concept of comprehensive remission in rheumatoid arthritis: The SUMAR project

Introduction and objectives

The SUMAR project aimed to establish a consensus on the concept of remission in patients with rheumatoid arthritis (RA) that takes into account the different perspectives of patients, health care professionals and health care managers.

Materials and methods

The scientific committee comprised a rheumatologist who acted as a national coordinator, 4 rheumatologists, 1 primary care physician, 1 nurse, 2 hospital pharmacists, 2 health care managers and 1 member of a patient advocacy group. The study was undertaken from 2020 to 2021 in three phases: (1) analysis of several perspectives on remission in RA with the participation of 275 patients, 160 rheumatologists and 31 health care managers; (2) an integrative definition of remission, which included two multidisciplinary workshops with 11 and 12 participants; and (3) extension and dissemination with up to 200 participants in 7 regional multidisciplinary meetings.

Results

The concept of remission in the different settings and by the different stakeholders was heterogeneous. It was agreed that, in addition to inflammatory activity, remission should include pain and functionality as well as the duration of remission. For the participants, the definition of remission varied depending on the clinical scenario, without or with structural damage, seeking to “normalize” the outcomes in the former and avoid progression in the latter. The implementation of the concept of comprehensive remission was considered less feasible, and the main barriers to implementation were the lack of time for consultation and the variability in information technology systems across the different autonomous communities.

Discussion and conclusions

This definition of remission is not only based on the concept of the presence or absence of inflammatory activity based on existing indexes, but also includes variables directly reported by the patient that are related to their health and quality of life.
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