Trotter Patrick, Hill Quentin A
Department of Surgery, University of Cambridge, Cambridge, UK.
National Health Service Blood and Transplant, Organ Donation and Transplant Directorate, Bristol, UK.
Patient Relat Outcome Meas. 2018 Nov 27;9:369-384. doi: 10.2147/PROM.S140932. eCollection 2018.
Immune thrombocytopenia (ITP) is an immune-mediated disorder characterized by a reduced platelet count and patients may develop bruising or mucosal bleeding. Since 2003, generic health-related quality of life (HRQoL) measures have been applied and ITP-specific measures developed, alongside trials of novel therapeutic agents. These have identified significant morbidity in patients with ITP, including fatigue, fear of bleeding and a negative impact on role, social and work activities. This review critically evaluates HRQoL data in adults and children with ITP. It also considers the impact of treatment and how patient-reported outcomes might be applied to care to optimize patients' quality of life.
免疫性血小板减少症（ITP）是一种免疫介导的疾病，其特征为血小板计数减少，患者可能会出现瘀伤或黏膜出血。自2003年以来，通用的健康相关生活质量（HRQoL）测量方法已得到应用，同时还开发了ITP特异性测量方法，以及新型治疗药物的试验。这些研究已经确定ITP患者存在显著的发病率，包括疲劳、出血恐惧以及对角色、社交和工作活动的负面影响。本综述对成人和儿童ITP患者的HRQoL数据进行了批判性评估。它还考虑了治疗的影响，以及患者报告的结果如何应用于护理以优化患者的生活质量。
