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

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          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) FEV 1% 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 FEV 1. 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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          Most cited references17

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          Coefficient alpha and the internal structure of tests

          Psychometrika, 16(3), 297-334
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            Statistical Power Analysis for the Behavioral Sciences

            <i>Statistical Power Analysis</i> is a nontechnical guide to power analysis in research planning that provides users of applied statistics with the tools they need for more effective analysis. The Second Edition includes: <br> * a chapter covering power analysis in set correlation and multivariate methods;<br> * a chapter considering effect size, psychometric reliability, and the efficacy of "qualifying" dependent variables and;<br> * expanded power and sample size tables for multiple regression/correlation.<br>
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              Measurement of health status. Ascertaining the minimal clinically important difference.

              In recent years quality of life instruments have been featured as primary outcomes in many randomized trials. One of the challenges facing the investigator using such measures is determining the significance of any differences observed, and communicating that significance to clinicians who will be applying the trial results. We have developed an approach to elucidating the significance of changes in score in quality of life instruments by comparing them to global ratings of change. Using this approach we have established a plausible range within which the minimal clinically important difference (MCID) falls. In three studies in which instruments measuring dyspnea, fatigue, and emotional function in patients with chronic heart and lung disease were applied the MCID was represented by mean change in score of approximately 0.5 per item, when responses were presented on a seven point Likert scale. Furthermore, we have established ranges for changes in questionnaire scores that correspond to moderate and large changes in the domains of interest. This information will be useful in interpreting questionnaire scores, both in individuals and in groups of patients participating in controlled trials, and in the planning of new trials.
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                Author and article information

                Journal
                Thorax
                Thorax
                thoraxjnl
                thorax
                Thorax
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                0040-6376
                1468-3296
                September 2017
                28 February 2017
                : 72
                : 9
                : 832-839
                Affiliations
                [1 ] Primary Ciliary Dyskinesia Centre, University Hospital Southampton NHS Foundation Trust , Southampton, UK
                [2 ] NIHR Southampton Respiratory Biomedical Research Unit, University of Southampton and University Hospital Southampton NHS Foundation Trust , Southampton, UK
                [3 ] Academic Unit of Clinical and Experimental Sciences Faculty of Medicine, University of Southampton , Southampton, UK
                [4 ] School of Applied Psychology, University College Cork , Cork, Ireland
                [5 ] Department of Pediatrics and Marsico Lung Institute, University of North Carolina School of Medicine , Chapel Hill, North Carolina, USA
                [6 ] Division of Respiratory Medicine, The Hospital for Sick Children , Toronto, Ontario, Canada
                [7 ] Child Health Evaluative Sciences, The Hospital for Sick Children , Toronto, Ontario, Canada
                [8 ] Department of Pediatrics, University of Toronto , Toronto, Ontario, Canada
                [9 ] Institute of Health Policy, Management and Education, University of Toronto , Toronto, Ontario, Canada
                [10 ] Department of Psychology, University of Miami , Coral Gables, Florida, USA
                Author notes
                [Correspondence to ] Dr Jane S Lucas, Faculty of Medicine, Mail Point 803, University Hospital Southampton, Southampton SO16 6YD, UK; jlucas1@ 123456soton.ac.uk
                Article
                thoraxjnl-2016-209356
                10.1136/thoraxjnl-2016-209356
                5738537
                28246220
                9feece1a-fc58-4227-b43b-3ccfdfba8e04
                Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

                This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

                History
                : 29 August 2016
                : 26 January 2017
                : 31 January 2017
                Categories
                1506
                Orphan Lung Disease
                Original article
                Custom metadata
                unlocked

                Surgery
                rare lung diseases,respiratory measurement,psychology
                Surgery
                rare lung diseases, respiratory measurement, psychology

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