a Depatment of Haematology , Odense University Hospital , Odense , Denmark.
b Department of Pediatrics, Division of Hematology , New York Presbyterian Hospital, Weill Cornell Medicine , New York , NY , USA.
Expert Rev Hematol. 2018 Dec;11(12):975-985. doi: 10.1080/17474086.2018.1548930. Epub 2018 Nov 27.
: Immune thrombocytopenia (ITP) and the associated biologic and psychological effects can lead to reduced health-related quality of life (HRQoL). : This review focuses on the impact of ITP itself and its treatment on patients' HRQoL. The findings show that the HRQoL is uniformly reduced amongst ITP patients, both with and without interventions. ITP significantly affects many aspects of patient HRQoL, which is comparable to that of patients with other chronic diseases. However, there is a lack of longitudinal studies among unselected ITP populations and the majority of studies focus on statistical differences between groups or between measures at different time points rather than quality of life (QoL) changes that are perceived as clinically relevant in patients. : Due to ITP being a chronic disease with an ongoing risk of bleeding, many treatments, and a good prognosis for survival, patients deal with their symptoms over prolonged time periods and good HRQoL is very important. In this review of HRQoL in ITP, we provide data on the current understanding, how HRQoL may be modified by treatment, and why it needs to be included as an outcome in future studies to optimize management of HRQoL issues in clinical practice.
免疫性血小板减少症（ITP）及其相关的生物学和心理影响可导致健康相关生活质量（HRQoL）下降。本综述重点关注 ITP 本身及其治疗对患者 HRQoL 的影响。研究结果表明，ITP 患者的 HRQoL 普遍下降，无论是否干预。ITP 显著影响患者 HRQoL 的许多方面，与其他慢性疾病患者相当。然而，在未选择的 ITP 人群中缺乏纵向研究，并且大多数研究侧重于组间或不同时间点之间测量的统计学差异，而不是患者认为具有临床相关性的生活质量（QoL）变化。由于 ITP 是一种慢性疾病，存在持续出血风险、多种治疗方法和良好的生存预后，患者会在较长时间内应对其症状，因此良好的 HRQoL 非常重要。在对 ITP 中的 HRQoL 进行的综述中，我们提供了有关当前认识的数据、治疗如何可能改变 HRQoL 以及为什么需要将其作为未来研究中的结果纳入，以优化临床实践中 HRQoL 问题的管理。
