Verbinnen Iris, Monte-Boquet Emilio, Parow Detlev, Lacombe Fabienne, Pothecary Andrew, van Kuijk Arno W R, Harrington Laura, Müllerová Edita, Pinter Andreas, Erstling Ulrike, Tomasini Andrea, Helliwell Philip S
Laboratory of Protein Phosphorylation and Proteomics, Department of Cellular and Molecular Medicine, Leuven Brain Institute, University of Leuven, Leuven, Belgium.
Pharmacy Department, Drug Clinical Area, Hospital Universitari i Politècnic la Fe, Valencia, Spain.
Rheumatol Ther. 2024 Jun;11(3):795-815. doi: 10.1007/s40744-024-00664-3. Epub 2024 Apr 25.
INTRODUCTION: Psoriatic arthritis (PsA) is a complex, progressive, and often debilitating disease. Despite recent advances in treatment, numerous unmet needs in patient care persist. Rheumacensus is a multistakeholder, pan-European initiative designed to identify ways to elevate the standard of care (SoC) and treatment ambition for patients with PsA, using the perspectives of three key stakeholder groups: patients, healthcare professionals (HCPs) and payors. METHODS: Rheumacensus followed three phases: an insights-gathering workshop to identify current unmet needs in PsA and an area of focus for the project, a modified Delphi process to gain consensus on improvements within the agreed area of focus, and a Consensus Council (CC) meeting which used consensus statements as inspiration to generate 'Calls to Action' (CTA)-practical measures which, if implemented, could elevate the SoC for patients with PsA. RESULTS: The Rheumacensus CC consisted of four patient representatives, four HCPs and four payors. All 12 members completed all three Delphi e-consultations. The shared area of focus that informed the Delphi process was "patient empowerment through education on the disease and treatment options available, to enable patient involvement in management". Four key themes emerged from the Delphi process: patient empowerment, patient knowledge and sources of education, patient-HCP consultations, and optimal initial treatment. Statements within these themes informed 12 overarching CTA, which focus on the need for a multistakeholder approach to implementing a paradigm shift towards patient-centred care and improved outcomes for patients with PsA. CONCLUSION: Rheumacensus has identified shortcomings in the current SoC for patients with PsA and provides a foundation for change through practical CTA. It is hoped that all stakeholders will now take practical steps towards implementing these CTA across Europe to elevate the SoC for patients with PsA.
引言:银屑病关节炎(PsA)是一种复杂、进行性且常导致身体衰弱的疾病。尽管近期治疗取得了进展,但患者护理方面仍存在众多未满足的需求。类风湿关节炎普查(Rheumacensus)是一项由多方利益相关者参与的泛欧倡议,旨在从患者、医疗保健专业人员(HCP)和支付方这三个关键利益相关者群体的角度,确定提高PsA患者护理标准(SoC)和治疗目标的方法。 方法:类风湿关节炎普查包括三个阶段:一个洞察收集研讨会,以确定PsA当前未满足的需求和项目的重点领域;一个经过改进的德尔菲法流程,以就商定重点领域内的改进达成共识;以及一次共识理事会(CC)会议,该会议以共识声明为灵感,生成“行动呼吁”(CTA)——即切实可行的措施,若得以实施,可提高PsA患者的SoC。 结果:类风湿关节炎普查CC由四名患者代表、四名HCP和四名支付方组成。所有12名成员都完成了全部三轮德尔菲电子咨询。为德尔菲法流程提供信息的共同重点领域是“通过对疾病和可用治疗方案的教育增强患者权能,使患者能够参与管理”。德尔菲法流程产生了四个关键主题:患者赋权、患者知识及教育来源、患者与HCP的咨询以及最佳初始治疗。这些主题中的声明为12项总体CTA提供了依据,这些CTA侧重于需要采取多方利益相关者方法,以实现向以患者为中心的护理的范式转变,并改善PsA患者的治疗效果。 结论:类风湿关节炎普查已确定了当前PsA患者SoC中的不足之处,并通过切实可行的CTA为变革奠定了基础。希望所有利益相关者现在都能采取实际步骤,在欧洲各地实施这些CTA,以提高PsA患者的SoC。
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