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Validation of a health-related quality of life instrument for primary ciliary dyskinesia (QOL-PCD)

Validation of a health-related quality of life instrument for primary ciliary dyskinesia (QOL-PCD)
Validation of a health-related quality of life instrument for primary ciliary dyskinesia (QOL-PCD)
Background: Quality of life (QOL)-primary ciliary dyskinesia (PCD) is the first disease-specific, health-related QOL instrument for PCD. Psychometric validation of QOL-PCD assesses the performance of this measure in adults, including its reliability, validity and responsiveness to change.Methods: Seventy-two adults (mean (range) age: 33 years (18–79 years); mean (range) FEV1% predicted: 68 (26–115)) with PCD completed the 49-item QOL-PCD and generic QOL measures: Short-Form 36 Health Survey, Sino-Nasal Outcome Test 20 (SNOT-20) and St George Respiratory Questionnaire (SGRQ)-C. Thirty-five participants repeated QOL-PCD 10–14 days later to measure stability or reproducibility of the measure.Results: Multitrait analysis was used to evaluate how the items loaded on 10 hypothesised scales: physical, emotional, role and social functioning, treatment burden, vitality, health perceptions, upper respiratory symptoms, lower respiratory symptoms and ears and hearing symptoms. This analysis of item-to-total correlations led to 9 items being dropped; the validated measure now comprises 40 items. Each scale had excellent internal consistency (Cronbach's α: 0.74 to 0.94). Two-week test–retest demonstrated stability for all scales (intraclass coefficients 0.73 to 0.96). Significant correlations were obtained between QOL-PCD scores and age and FEV1. Strong relationships were also found between QOL-PCD scales and similar constructs on generic questionnaires, for example, lower respiratory symptoms and SGRQ-C (r=0.72, p<0.001), while weak correlations were found between measures of different constructs.Conclusions: QOL-PCD has demonstrated good internal consistency, test–retest reliability, convergent and divergent validity. QOL-PCD offers a promising tool for evaluating new therapies and for measuring symptoms, functioning and QOL during routine care.
0040-6376
Behan, Laura
cf1a7b5e-64c5-4b02-8db2-7ad96781d40d
Leigh, Margaret W.
70d7e4e3-28ad-4bd2-a5c1-5daba603e1cb
Dell, Sharon D.
736623b0-32d7-45a4-811b-af3debee2eae
Dunn Galvin, Audrey
df33ae04-bb19-4024-83ed-25c3e3a676e0
Quittner, Alexandra L.
c0f8318e-574d-4766-8154-6f055eba45ea
Lucas, Jane S.
5cb3546c-87b2-4e59-af48-402076e25313
Behan, Laura
cf1a7b5e-64c5-4b02-8db2-7ad96781d40d
Leigh, Margaret W.
70d7e4e3-28ad-4bd2-a5c1-5daba603e1cb
Dell, Sharon D.
736623b0-32d7-45a4-811b-af3debee2eae
Dunn Galvin, Audrey
df33ae04-bb19-4024-83ed-25c3e3a676e0
Quittner, Alexandra L.
c0f8318e-574d-4766-8154-6f055eba45ea
Lucas, Jane S.
5cb3546c-87b2-4e59-af48-402076e25313

Behan, Laura, Leigh, Margaret W., Dell, Sharon D., Dunn Galvin, Audrey, Quittner, Alexandra L. and Lucas, Jane S. (2017) Validation of a health-related quality of life instrument for primary ciliary dyskinesia (QOL-PCD). Thorax. (doi:10.1136/thoraxjnl-2016-209356).

Record type: Article

Abstract

Background: Quality of life (QOL)-primary ciliary dyskinesia (PCD) is the first disease-specific, health-related QOL instrument for PCD. Psychometric validation of QOL-PCD assesses the performance of this measure in adults, including its reliability, validity and responsiveness to change.Methods: Seventy-two adults (mean (range) age: 33 years (18–79 years); mean (range) FEV1% predicted: 68 (26–115)) with PCD completed the 49-item QOL-PCD and generic QOL measures: Short-Form 36 Health Survey, Sino-Nasal Outcome Test 20 (SNOT-20) and St George Respiratory Questionnaire (SGRQ)-C. Thirty-five participants repeated QOL-PCD 10–14 days later to measure stability or reproducibility of the measure.Results: Multitrait analysis was used to evaluate how the items loaded on 10 hypothesised scales: physical, emotional, role and social functioning, treatment burden, vitality, health perceptions, upper respiratory symptoms, lower respiratory symptoms and ears and hearing symptoms. This analysis of item-to-total correlations led to 9 items being dropped; the validated measure now comprises 40 items. Each scale had excellent internal consistency (Cronbach's α: 0.74 to 0.94). Two-week test–retest demonstrated stability for all scales (intraclass coefficients 0.73 to 0.96). Significant correlations were obtained between QOL-PCD scores and age and FEV1. Strong relationships were also found between QOL-PCD scales and similar constructs on generic questionnaires, for example, lower respiratory symptoms and SGRQ-C (r=0.72, p<0.001), while weak correlations were found between measures of different constructs.Conclusions: QOL-PCD has demonstrated good internal consistency, test–retest reliability, convergent and divergent validity. QOL-PCD offers a promising tool for evaluating new therapies and for measuring symptoms, functioning and QOL during routine care.

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Accepted/In Press date: 31 January 2017
e-pub ahead of print date: 28 February 2017
Organisations: Cancer Sciences, Clinical & Experimental Sciences

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Local EPrints ID: 410898
URI: https://eprints.soton.ac.uk/id/eprint/410898
ISSN: 0040-6376
PURE UUID: b5feb97e-fce3-4c49-b48b-2c3b73f00b50

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Date deposited: 09 Jun 2017 16:31
Last modified: 19 Jul 2019 18:16

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