Arranz P, Remor E, Quintana M, Villar A, Díaz J L, Moreno M, Monteagudo J, Ugarriza A, Soto I, Pérez R, Chacón J, García-Luaces M, Cid A, Balda I, López M F, Gutíerrez M J, Martínez E, Marrero C, Prieto M, Sedano C, Vaca R, Altisent C, Hernández-Navarro F
Servicio de Hematología y Hemoterapia, Hospital Universitario La Paz, Madrid, Spain.
Haemophilia. 2004 Jul;10(4):376-82. doi: 10.1111/j.1365-2516.2004.00918.x.
A haemophilia-specific health-related quality-of-life questionnaire (named 'Hemofilia-QoL') was developed to assess quality-of-life in adults with haemophilia, and was psychometrically tested. Seventy-three interviews with haemophilia patients and health care professionals were used to generate the items included in the questionnaire, and expert ratings on the items formulated were used to screen them for potential omission. This was followed by psychometric testing in a sample of 35 patients. Preliminary psychometric testing of the revised questionnaire version, which contains 10 domains (physical health, physical role, joint damage, pain, treatment satisfaction, emotional role, mental health, social support), showed acceptable reliability (alpha = 0.94 for the Hemofilia-QoL total score) and validity, and this will be examined in a subsequent study with a larger patient sample.
开发了一种血友病特异性健康相关生活质量问卷（名为“Hemofilia-QoL”），用于评估成年血友病患者的生活质量，并对其进行了心理测量学测试。对73名血友病患者和医疗保健专业人员进行访谈，以生成问卷中包含的项目，并利用对所制定项目的专家评分来筛选可能遗漏的项目。随后，在35名患者的样本中进行了心理测量学测试。修订后的问卷版本包含10个领域（身体健康、身体功能、关节损伤、疼痛、治疗满意度、情感功能、心理健康、社会支持），其初步心理测量学测试显示出可接受的信度（Hemofilia-QoL总分的α系数为0.94）和效度，后续将在更大的患者样本研究中对其进行检验。
