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: 33â €..years (18-79â €..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 10-14â €..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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 832-839 |
| Number of pages | 8 |
| Journal | Thorax |
| Volume | 72 |
| Issue number | 9 |
| DOIs | |
| State | Published - Sep 1 2017 |
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Keywords
- Psychology
- Rare lung diseases
- Respiratory Measurement
ASJC Scopus subject areas
- Pulmonary and Respiratory Medicine
Cite this
Validation of a health-related quality of life instrument for primary ciliary dyskinesia (QOL-PCD). / Behan, Laura; Leigh, Margaret W.; Dell, Sharon D.; Dunn Galvin, Audrey; Quittner, Alexandra; Lucas, Jane S.
In: Thorax, Vol. 72, No. 9, 01.09.2017, p. 832-839.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Validation of a health-related quality of life instrument for primary ciliary dyskinesia (QOL-PCD)
AU - Behan, Laura
AU - Leigh, Margaret W.
AU - Dell, Sharon D.
AU - Dunn Galvin, Audrey
AU - Quittner, Alexandra
AU - Lucas, Jane S.
PY - 2017/9/1
Y1 - 2017/9/1
N2 - 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: 33â €..years (18-79â €..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 10-14â €..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.
AB - 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: 33â €..years (18-79â €..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 10-14â €..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.
KW - Psychology
KW - Rare lung diseases
KW - Respiratory Measurement
UR - http://www.scopus.com/inward/record.url?scp=85020514939&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85020514939&partnerID=8YFLogxK
U2 - 10.1136/thoraxjnl-2016-209356
DO - 10.1136/thoraxjnl-2016-209356
M3 - Article
C2 - 28246220
AN - SCOPUS:85020514939
VL - 72
SP - 832
EP - 839
JO - Thorax
JF - Thorax
SN - 0040-6376
IS - 9
ER -