PDF(Pubmed)
Abstract：
In recent years, questionnaires were published in English to assess the quality of life of patients with PCD (Primary Ciliary Diskinesia) for adults, adolescents aged 13-17 years, and children aged 6-12 years and their caregivers. This study aimed to prepare Polish versions of the questionnaires and validate them in specific age groups with the participation of Polish patients with PCD. The individual questionnaires were translated and discussed with the involvement of the creator of the original questionnaire in English. Patients completed the questionnaires according to their affiliation with one of the groups. Validation was based on internal consistency analysis (Cronbach\'s alpha coefficient and split-half reliability) and test-retest reliability (intraclass correlation coefficient-ICC). The internal consistency of all questionnaires was from moderate to very good (Cronbach\'s alpha 0.67-0.91, split-half reliability 0.53-0.95). The consistency of the measurements showed excellent repeatability (ICC 0.67-0.91). The surveyed Polish PCD patients rated their quality of life quite well (63-77%). QOL questionnaires for patients with PCD can be used routinely during each medical check-up as a simple tool to provide the doctor with an indication of the effectiveness of treatment and the impact of the disease on the patient\'s quality of life.
摘要：
近年来,问卷以英语发表，以评估成人PCD（原发性纤毛失调）患者的生活质量，13-17岁的青少年，以及6-12岁的儿童和他们的照顾者。这项研究旨在准备波兰版本的问卷，并在波兰PCD患者的参与下在特定年龄段进行验证。在原始问卷的创建者的参与下，翻译并讨论了单个问卷。患者根据与其中一组的隶属关系完成问卷。验证基于内部一致性分析（Cronbach的α系数和半可靠性）和重测可靠性（组内相关系数-ICC）。所有问卷的内部一致性从中等到非常好（Cronbach的α0.67-0.91，半可靠性0.53-0.95）。测量的一致性显示出优异的可重复性(ICC0.67-0.91)。接受调查的波兰PCD患者对他们的生活质量评价很好（63-77％）。PCD患者的QOL问卷可以在每次体检期间常规使用，作为一种简单的工具，为医生提供治疗有效性和疾病对患者生活质量影响的指示。
