Division of Hematology/Oncology, Department of Pediatrics, Children's Hospital of Eastern Ontario, 401 Smyth, Ottawa, ON, K1H 8L1, Canada,
Ann Hematol. 2010 Jul;89 Suppl 1:51-4. doi: 10.1007/s00277-010-0981-6. Epub 2010 May 12.
Immune thrombocytopenic purpura (ITP) is a rare disease with infrequent serious bleeding making clinical trials difficult. One solution to this problem is to use alternative outcome measures such as health-related quality of life (HRQL). This review describes the various HRQL tools available to researchers including measures that are generic (applicable to many different disease types) and disease-specific measures developed explicitly for ITP specifically detailing the Kids' ITP Tools and the ITP-patient administered questionnaire. This review describes how incorporating HRQL tools such as these will allow researchers to move forward and do methodologically sound research.
免疫性血小板减少性紫癜（ITP）是一种罕见疾病，很少出现严重出血，这使得临床试验变得困难。解决这个问题的一种方法是使用替代的结果测量方法，如健康相关生活质量（HRQL）。这篇综述描述了研究人员可用的各种 HRQL 工具，包括通用的（适用于许多不同的疾病类型）和专门为 ITP 开发的疾病特异性的测量工具，特别详细描述了儿童 ITP 工具和 ITP-患者管理问卷。这篇综述描述了如何纳入这些 HRQL 工具，使研究人员能够向前迈进，并进行方法合理的研究。
