Lucas Jane S, Behan Laura, Dunn Galvin Audrey, Alpern Adrianne, Morris Anjana M, Carroll Mary P, Knowles Michael R, Leigh Margaret W, Quittner Alexandra L
Primary Ciliary Dyskinesia Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK NIHR Southampton Respiratory Biomedical Research Unit, University of Southampton and University Hospital Southampton NHS Foundation Trust, Southampton, UK Academic Unit of Clinical and Experimental Sciences Faculty of Medicine, University of Southampton, Southampton, UK Both authors contributed equally
Primary Ciliary Dyskinesia Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK NIHR Southampton Respiratory Biomedical Research Unit, University of Southampton and University Hospital Southampton NHS Foundation Trust, Southampton, UK Academic Unit of Clinical and Experimental Sciences Faculty of Medicine, University of Southampton, Southampton, UK Dept of Applied Psychology, University College Cork, Cork, Ireland Both authors contributed equally.
Eur Respir J. 2015 Aug;46(2):375-83. doi: 10.1183/09031936.00216214. Epub 2015 May 14.
Primary ciliary dyskinesia (PCD) is characterised by chronic suppurative lung disease, rhino-sinusitis, hearing impairment and sub-fertility. We have developed the first multidimensional measure to assess health-related quality of life (HRQoL) in adults with PCD (QOL-PCD).Following a literature review and expert panel meeting, open-ended interviews with patients investigated the impact of PCD on HRQoL in the UK and North America (n=21). Transcripts were content analysed to derive saturation matrices. Items were rated for relevance by patients (n=49). Saturation matrices, relevance scores, literature review, evaluation of existing measures, and expert opinion contributed to development of a preliminary questionnaire. The questionnaire was refined following cognitive interviews (n=18).Open-ended interviews identified a spectrum of issues unique to adults with PCD. Saturation matrices confirmed comprehensive coverage of content. QOL-PCD includes 48 items covering the following seven domains: Physical Functioning, Emotional Functioning, Treatment Burden, Respiratory and Sinus Symptoms, Ears and Hearing, Social Functioning, and Vitality and Health Perceptions. Cognitive testing confirmed that content was comprehensive and the items were well-understood by respondents.Content validity and cognitive testing supported the items and structure. QOL-PCD has been translated into other languages and is awaiting psychometric testing.
原发性纤毛运动障碍（PCD）的特征为慢性化脓性肺部疾病、鼻窦炎、听力障碍和生育力低下。我们开发了首个多维测量工具，用于评估成年PCD患者的健康相关生活质量（HRQoL）（PCD生活质量量表，QOL-PCD）。在进行文献综述和专家小组会议后，我们对患者进行了开放式访谈，以调查PCD对英国和北美的HRQoL的影响（n = 21）。对访谈记录进行内容分析，以得出饱和矩阵。由患者（n = 49）对各项进行相关性评分。饱和矩阵、相关性得分、文献综述、现有测量工具的评估以及专家意见共同促成了初步问卷的制定。在进行认知访谈（n = 18）后，对问卷进行了完善。开放式访谈确定了成年PCD患者特有的一系列问题。饱和矩阵证实了内容的全面覆盖。QOL-PCD包括48个项目，涵盖以下七个领域：身体功能、情绪功能、治疗负担、呼吸和鼻窦症状、耳朵和听力、社会功能以及活力和健康认知。认知测试证实内容全面，且受访者对这些项目理解良好。内容效度和认知测试支持了这些项目和结构。QOL-PCD已被翻译成其他语言，正在等待进行心理测量测试。
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