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Health related quality of life in adult Primary Ciliary Dyskinesia patients in Cyprus: development and validation of the Greek version of the QOL-PCD questionnaire

Health related quality of life in adult Primary Ciliary Dyskinesia patients in Cyprus: development and validation of the Greek version of the QOL-PCD questionnaire
Health related quality of life in adult Primary Ciliary Dyskinesia patients in Cyprus: development and validation of the Greek version of the QOL-PCD questionnaire
Background: the 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. Methods: forward 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 two 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. Results: moderate 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). Conclusion: 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.
Primary Ciliary dyskinesia, Psychometric testing, Quality of life
1477-7525
1-9
Ioannou, Phivos
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Kouis, Panayiotis
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Kakkoura, Maria G
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Kaliva, Margarita
62ee3f38-f893-42bd-b2b6-c312a8570af4
Toliopoulou, Aristoula
5fe470f2-ab46-4dea-8df8-1c7109d503be
Andreou, Kyriacos
55de6a1c-198c-4bd2-b6c4-3b304fa36069
Behan, Laura
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Lucas, Jane
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Pananikolaou, Viki
eeb053be-6002-4910-84c7-166c4f306f1a
Charalambous, George
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Middleton, Nicos
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Yiallouros, Panayiotis
af76d731-a608-441a-bf03-8aa423799bb1
Ioannou, Phivos
e15344cb-8384-46be-a0f7-a929d3bbfe3d
Kouis, Panayiotis
4f841ec2-b121-4afd-8e7b-ed0c0fe89523
Kakkoura, Maria G
7753d5a0-6474-4e4b-b25b-f7eb6bab0be5
Kaliva, Margarita
62ee3f38-f893-42bd-b2b6-c312a8570af4
Toliopoulou, Aristoula
5fe470f2-ab46-4dea-8df8-1c7109d503be
Andreou, Kyriacos
55de6a1c-198c-4bd2-b6c4-3b304fa36069
Behan, Laura
cf1a7b5e-64c5-4b02-8db2-7ad96781d40d
Lucas, Jane
5cb3546c-87b2-4e59-af48-402076e25313
Pananikolaou, Viki
eeb053be-6002-4910-84c7-166c4f306f1a
Charalambous, George
cba8a347-8063-4c0b-9374-98ccaf6a4f8e
Middleton, Nicos
8e5b29a4-a616-4ac1-8f5d-64e4c51ecec3
Yiallouros, Panayiotis
af76d731-a608-441a-bf03-8aa423799bb1

Ioannou, Phivos, Kouis, Panayiotis, Kakkoura, Maria G, Kaliva, Margarita, Toliopoulou, Aristoula, Andreou, Kyriacos, Behan, Laura, Lucas, Jane, Pananikolaou, Viki, Charalambous, George, Middleton, Nicos and Yiallouros, Panayiotis (2020) Health related quality of life in adult Primary Ciliary Dyskinesia patients in Cyprus: development and validation of the Greek version of the QOL-PCD questionnaire. Health and Quality of Life Outcomes, 18 (1), 1-9, [105]. (doi:10.1186/s12955-020-01360-w).

Record type: Article

Abstract

Background: the 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. Methods: forward 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 two 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. Results: moderate 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). Conclusion: 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.

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Tables Greek QOL-PCD Submitted 03 09 2019
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Supplementary File 1 Greek Adult QOL-PCD questionaire
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Figure 1 Translation diagram
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Accepted/In Press date: 13 April 2020
e-pub ahead of print date: 22 April 2020
Published date: 2020
Keywords: Primary Ciliary dyskinesia, Psychometric testing, Quality of life

Identifiers

Local EPrints ID: 439204
URI: http://eprints.soton.ac.uk/id/eprint/439204
ISSN: 1477-7525
PURE UUID: 0aaa4a34-aeb3-4bd7-bdfb-f85a1ef4ae23

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Date deposited: 07 Apr 2020 16:30
Last modified: 22 Jul 2022 23:29

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Contributors

Author: Phivos Ioannou
Author: Panayiotis Kouis
Author: Maria G Kakkoura
Author: Margarita Kaliva
Author: Aristoula Toliopoulou
Author: Kyriacos Andreou
Author: Laura Behan
Author: Jane Lucas
Author: Viki Pananikolaou
Author: George Charalambous
Author: Nicos Middleton
Author: Panayiotis Yiallouros

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