评估原发性睫状肌运动障碍患者生活质量的波兰语问卷(PCD-QOL)的验证。

IF 1.8 Q3 RESPIRATORY SYSTEM Advances in respiratory medicine Pub Date : 2024-06-24 DOI:10.3390/arm92040025
Magdalena Anita Roszak, Anna Bręborowicz, Aleksandra Szczepankiewicz, Marcin Mikoś, Zuzanna Bukowy-Bieryłło, Barbara Więckowska, Laura Behan, Hanna Dmeńska, Joanna Goździk-Spychalska, Agata Nowicka, Ewa Sapiejka, Paulina Famulska, Elżbieta Gąsecka, Andrzej Pogorzelski, Irena Wojsyk-Banaszak
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引用次数: 0

摘要

近年来,针对成人、13-17 岁青少年、6-12 岁儿童及其照护者发布了评估 PCD(原发性睫状肌盘剥症)患者生活质量的英文问卷。本研究旨在编制波兰语版本的调查问卷,并在波兰 PCD 患者的参与下,在特定年龄组中对其进行验证。在英语原版问卷制作者的参与下,对个别问卷进行了翻译和讨论。患者根据其所属组别填写问卷。验证基于内部一致性分析(克朗巴赫α系数和分半信度)和测试-再测信度(类内相关系数-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, split-half reliability 0.53-0.95)。测量结果的一致性显示出极佳的重复性(ICC 0.67-0.91)。接受调查的波兰 PCD 患者对自己的生活质量评价良好(63%-77%)。针对 PCD 患者的 QOL 问卷可作为一种简单的工具,在每次体检时常规使用,以便医生了解治疗效果以及疾病对患者生活质量的影响。
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Validation of Polish-Language Questionnaires for Assessing the Quality of Life of Patients with Primary Ciliary Dyskinesia (PCD-QOL).

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.

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来源期刊
Advances in respiratory medicine
Advances in respiratory medicine RESPIRATORY SYSTEM-
CiteScore
2.60
自引率
0.00%
发文量
90
期刊介绍: "Advances in Respiratory Medicine" is a new international title for "Pneumonologia i Alergologia Polska", edited bimonthly and addressed to respiratory professionals. The Journal contains peer-reviewed original research papers, short communications, case-reports, recommendations of the Polish Respiratory Society concerning the diagnosis and treatment of lung diseases, editorials, postgraduate education articles, letters and book reviews in the field of pneumonology, allergology, oncology, immunology and infectious diseases. "Advances in Respiratory Medicine" is an open access, official journal of Polish Society of Lung Diseases, Polish Society of Allergology and National Research Institute of Tuberculosis and Lung Diseases.
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