Abstract
BackgroundThe QOL-PCD questionnaire is a recently developed Health Related Quality of Life (HRQoL) instrument for Primary Ciliary Dyskinesia. The aim of this study was to translate the adult QOL-PCD questionnaire into Greek language and to conduct psychometric validation to assess its performance.MethodsForward translations to Greek and backward translation to English were performed, followed by cognitive interviews in 12 adult PCD patients. The finalized translated version was administered to a consecutive sample of 31 adult, Greek speaking PCD patients in Cyprus for psychometric validation, which included assessment of internal consistency, test-retest reliability, construct and convergent validity. Internal consistency was assessed by Cronbach’s alpha test in terms of the overall and sub-scales. Test-retest reliability was assessed by repeat administration of the questionnaire within 2 weeks and calculation of the intra-class correlation (ICC). Construct validity was assessed by comparing different groups of patients based on a-priori hypotheses and convergent validity was evaluated by examining associations between the QOL-PCD and SF-36 questionnaires.ResultsModerate to good internal consistency was observed (Cronbach’s α: 0.46–0.88 across sub-scales) and test-retest reliability assessment demonstrated good repeatability for most scales (ICC: 0.67–0.91 across subscales). Patients of female gender, older age and lower lung function exhibited lower QOL-PCD scores in general, while high correlations for most QOL-PCD scales with corresponding SF-36 scales were observed, in particular for physical functioning (r = 0.78, p < 0.05).ConclusionThe adult version of QoL-PCD questionnaire has been translated according to international guidelines resulting to a cross-culturally validated Greek version which exhibited moderate to good metric properties in terms of internal consistency, stability, known-group and convergent validity.
Highlights
Primary Ciliary Dyskinesia (PCD) is a rare, genetically heterogeneous disease characterized by dysfunction of motile cilia and disruption of mucociliary clearance
The adult version of QoL-PCD questionnaire has been translated according to international guidelines resulting to a cross-culturally validated Greek version which exhibited moderate to good metric properties in terms of internal consistency, stability, known-group and convergent validity
We examined the associations between the scales of QOL-PCD and the scales of the generic 36-Item Short Form (SF-36) HR-QoL questionnaire
Summary
Primary Ciliary Dyskinesia (PCD) is a rare, genetically heterogeneous disease characterized by dysfunction of motile cilia and disruption of mucociliary clearance. In an effort to capture and access the impact of PCD from the patient perspective, a Health Related Quality of Life questionnaire (QOL-PCD) has been recently developed for pediatric, teenager and adult PCD patients [6,7,8,9] Following a rigorous process, which involved literature reviews, expert panel discussions, evaluation of existing measures and cognitive interviews, the QOL-PCD questionnaires were developed and validated in the English language These were translated into several languages including Greek [10,11,12,13]. The aim of this study was to translate the adult QOL-PCD questionnaire into Greek language and to conduct psychometric validation to assess its performance
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