Department of Pulmonology, Pediatric Allergy and Clinical Immunology, Poznan University of Medical Sciences, ul. Szpitalna 27/33, 60-567 Poznan, Poland.
Laboratory of Molecular and Cell Biology, Poznan University of Medical Sciences, ul. Szpitalna 27/33, 60-576 Poznan, Poland.
Adv Respir Med. 2024 Jun 24;92(4):254-262. doi: 10.3390/arm92040025.
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.
近年来，已经有英文版问卷用于评估原发性纤毛运动障碍（PCD）患者的生活质量，涵盖成人、13-17 岁青少年和 6-12 岁儿童及其照顾者。本研究旨在准备波兰语版本的问卷，并在波兰 PCD 患者的参与下对特定年龄组进行验证。对各个问卷进行翻译，并与英语原始问卷的创建者进行讨论。患者根据他们属于哪个组别来完成问卷。验证基于内部一致性分析（Cronbach's alpha 系数和分半信度）和测试-重测信度（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's alpha 0.67-0.91，分半信度 0.53-0.95）。测量的一致性显示出极好的可重复性（ICC 0.67-0.91）。接受调查的波兰 PCD 患者对他们的生活质量评价相当高（63-77%）。PCD 患者的 QOL 问卷可以在每次医疗检查中常规使用，作为一种简单的工具，为医生提供治疗效果和疾病对患者生活质量影响的指示。
