Emiralioğlu Nagehan, Karadağ Bülent, Özçelik H Uğur
Department of Pediatric Chest Diseases, Hacettepe University School of Medicine, Ankara, Turkey.
Department of Pediatric Chest Diseases, Marmara University School of Medicine, İstanbul, Turkey.
Turk Thorac J. 2017 Jan;18(1):19-22. doi: 10.5152/TurkThoracJ.2017.16049. Epub 2017 Jan 1.
Primary ciliary dyskinesia (PCD) is a major cause of progressive lung disease, and physiological measures do not reflect the impact of the disease on patients' daily symptoms or physical and social functions. We need valid and reliable health-related quality-of-life (HRQOL) measures in PCD to assess the symptoms and daily functions from the patient's perspective. Our aim was to develop a Turkish translation of PCD-specific HRQOL questionnairre to be used as outcomes in clinical trials.
This study was conducted at the Division of Pediatric Pulmonology, Hacettepe University Faculty of Medicine and the Division of Pediatric Pulmonology, Marmara University Faculty of Medicine. Forward and back translations were performed by three different translators. We recruited participants with PCD from different age groups of both sexes, with an aim to represent a wide spectrum of disease severity and performed the prototype of the translation in these participants.
Five participants from each age group [children (6-12 years), teenagers (13-17 years), adults (18+ years) and parents of children aged from 6 to 12 years] responded to the HRQOL questionnaire. Content analysis of the questions included the following domains depending on age: Respiratory Symptoms, Physical Functioning, Emotional Functioning, Treatment Burden, Ears and Hearing, Sinus Symptoms, Social Functioning, Role Functioning, Vitality, Health Perceptions, School Functioning, Eating and Weight. After the participants have completed the questionnaire, a cognitive debriefing interview was conducted with them, and the results of the interviews were used to form a final version of PCD-specific HRQOL, ready for formal validation.
A Turkish translation of PCD-specific HRQOL questionnaire was developed to meet the standards set by international guidelines. This questionnaire is expected to be useful as end points in clinical trials for monitoring health outcomes and for improving clinical decisions.
原发性纤毛运动障碍（PCD）是进行性肺部疾病的主要病因，而生理指标无法反映该疾病对患者日常症状或身体及社会功能的影响。我们需要在PCD中采用有效且可靠的健康相关生活质量（HRQOL）指标，以便从患者角度评估症状和日常功能。我们的目标是开发一份PCD特异性HRQOL问卷的土耳其语译本，用于临床试验中的结局评估。
本研究在哈杰泰佩大学医学院儿科肺病科及马尔马拉大学医学院儿科肺病科开展。由三名不同的翻译人员进行正向和反向翻译。我们招募了来自不同年龄组、不同性别的PCD患者，旨在涵盖广泛的疾病严重程度范围，并在这些参与者中进行翻译的原型测试。
每个年龄组[儿童（6 - 12岁）、青少年（13 - 17岁）、成年人（18岁及以上）以及6至12岁儿童的父母]各有五名参与者对HRQOL问卷做出了回应。根据年龄，问题的内容分析包括以下领域：呼吸道症状、身体功能、情绪功能、治疗负担、耳部与听力、鼻窦症状、社会功能、角色功能、活力、健康认知、学校功能、饮食与体重。参与者完成问卷后，对他们进行了认知反馈访谈，访谈结果用于形成PCD特异性HRQOL的最终版本，准备进行正式验证。
已开发出PCD特异性HRQOL问卷的土耳其语译本，以符合国际指南设定的标准。该问卷有望作为临床试验中的终点指标，用于监测健康结局并改善临床决策。
