Division of Hematology and Oncology, University of Virginia Medical Center, Charlottesville, VA, USA.
Haemostasis and Thrombosis Unit, Division of Hematology, Cliniques Universitaires Saint-Luc, Brussels, Belgium.
Hematology. 2024 Dec;29(1):2375177. doi: 10.1080/16078454.2024.2375177. Epub 2024 Jul 8.
Immune thrombocytopenia (ITP), an autoimmune disease characterized by low platelet counts and increased bleeding risk, can impair health-related quality of life (HRQoL), impacting patients' daily lives and mental health. A number of patient-reported outcome (PRO) measures (both generic and specific to ITP) can be used to understand the impact of ITP on HRQoL and generate evidence to guide disease management. As welldeveloped PRO tools could help in HRQoL assessment, their optimization could help to solidify a patient-centric approach to ITP management. Shared decision-making is a collaborative process between a patient and their healthcare professional in making decisions about care. Treatment decisions based on this shared process between physician and patient are recommended by clinical guidelines. The goal of this narrative review is to discuss treatment decisions with regards to patient-centric ITP management, with a focus on the impact of PRO measures and the process of shared decision-making in practice.
免疫性血小板减少症 (ITP) 是一种自身免疫性疾病，其特征是血小板计数降低和出血风险增加，可能会损害与健康相关的生活质量 (HRQoL)，影响患者的日常生活和心理健康。许多患者报告的结局 (PRO) 测量方法（包括 ITP 特异性和一般性 PRO 测量方法）可用于了解 ITP 对 HRQoL 的影响，并为指导疾病管理提供证据。完善的 PRO 工具有助于 HRQoL 评估，其优化有助于巩固以患者为中心的 ITP 管理方法。共同决策是指患者及其医疗保健专业人员在做出医疗护理决策时共同参与的过程。临床指南建议基于医生和患者之间共同决策过程做出治疗决策。本文旨在讨论与以患者为中心的 ITP 管理相关的治疗决策，重点讨论 PRO 测量方法的影响以及共同决策过程在实践中的应用。
