PDF(Pubmed)
Abstract：
Significant advancements have been achieved in delineating the progress of the Global PROMS (PROMS) Initiative. The PROMS Initiative, a collaborative endeavor by the European Charcot Foundation and the Multiple Sclerosis International Federation, strives to amplify the influence of patient input on MS care and establish a cohesive perspective on Patient-Reported Outcomes (PROs) for diverse stakeholders. This initiative has established an expansive, participatory governance framework launching four dedicated working groups that have made substantive contributions to research, clinical management, eHealth, and healthcare system reform. The initiative prioritizes the global integration of patient (For the purposes of the Global PROMS Initiative, the term \"patient\" refers to the people with the disease (aka People with Multiple Sclerosis - pwMS): any individual with lived experience of the disease. People affected by the disease/Multiple Sclerosis: any individual or group that is affected by the disease: E.g., family members, caregivers will be also engaged as the other stakeholders in the initiative). insights into the management of MS care. It merges subjective PROs with objective clinical metrics, thereby addressing the complex variability of disease presentation and progression. Following the completion of its second phase, the initiative aims to help increasing the uptake of eHealth tools and passive PROs within research and clinical settings, affirming its unwavering dedication to the progressive refinement of MS care. Looking forward, the initiative is poised to continue enhancing global surveys, rethinking to the relevant statistical approaches in clinical trials, and cultivating a unified stance among \'industry\', regulatory bodies and health policy making regarding the application of PROs in MS healthcare strategies.
摘要：
在描述全球PROMS（PROMS）倡议的进展方面取得了重大进展。PROMS倡议,欧洲夏科基金会和多发性硬化症国际联合会的合作努力，努力扩大患者输入对MS护理的影响，并为不同的利益相关者建立对患者报告结果（PRO）的凝聚力观点。这一倡议建立了一个广泛的，参与式治理框架启动了四个专门的工作组，这些工作组对研究做出了实质性贡献，临床管理，eHealth,和医疗体制改革。该计划优先考虑患者的全球融合（出于全球PROMS计划的目的，术语“患者”是指患有该疾病的人(又名患有多发性硬化症的人-pwMS):具有该疾病的生活经历的任何个体。受疾病/多发性硬化症影响的人：受疾病影响的任何个人或群体：例如，家庭成员,护理人员也将作为其他利益相关者参与该计划)。对MS护理管理的见解。它将主观PRO与客观临床指标融合在一起，从而解决了疾病表现和进展的复杂变异性。在第二阶段完成后，该计划旨在帮助在研究和临床环境中增加对电子健康工具和被动PRO的吸收，肯定其坚定不移地致力于MS护理的逐步完善。展望未来,该倡议准备继续加强全球调查，重新思考临床试验中的相关统计方法，在“行业”中培养统一的立场，监管机构和卫生政策制定，关于在MS医疗保健战略中应用PRO。
