The development and validation of a new coeliac disease quality of life survey (CD‐QOL)
Aliment Pharmacol Ther 31, 666–675 Summary Background Previous studies on coeliac disease (CD)‐related quality of life (QOL) have been limited by their use of a ‘generic’ rather than coeliac disease‐specific assessment instruments. Aim To develop and psychometrically validate a new coeliac disease...
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Published in | Alimentary pharmacology & therapeutics Vol. 31; no. 6; pp. 666 - 675 |
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Main Authors | , , , , , , , , , , |
Format | Journal Article |
Language | English |
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Oxford, UK
Blackwell Publishing Ltd
01.03.2010
Blackwell |
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Abstract | Aliment Pharmacol Ther 31, 666–675
Summary
Background Previous studies on coeliac disease (CD)‐related quality of life (QOL) have been limited by their use of a ‘generic’ rather than coeliac disease‐specific assessment instruments.
Aim To develop and psychometrically validate a new coeliac disease‐specific instrument, the CD‐QOL.
Methods Through a series of focus groups, we elicited items from patients that related to the specific nature of their disease and its impact on their basic needs. Through expert review, cognitive debriefing with patients and pilot testing, a scale was developed, refined and administered to 387 patients on a gluten‐free diet from both community‐based support groups and a tertiary care referral centre. Finally, a formal validation study was conducted to assess the psychometric properties of the CD‐QOL.
Results The final CD‐QOL has 20 items across four clinically relevant subscales (Limitations, Dysphoria, Health Concerns, and Inadequate Treatment). The CD‐QOL has high internal consistency, reliability, and psychometric validation indicates both convergent and discriminate validity.
Conclusions The CD‐QOL is a reliable and valid measure of coeliac disease related QOL. As a new disease‐specific instrument, it is likely to be a useful tool for evaluating patients with this disorder. |
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AbstractList | Previous studies on coeliac disease (CD)-related quality of life (QOL) have been limited by their use of a 'generic' rather than coeliac disease-specific assessment instruments.
To develop and psychometrically validate a new coeliac disease-specific instrument, the CD-QOL.
Through a series of focus groups, we elicited items from patients that related to the specific nature of their disease and its impact on their basic needs. Through expert review, cognitive debriefing with patients and pilot testing, a scale was developed, refined and administered to 387 patients on a gluten-free diet from both community-based support groups and a tertiary care referral centre. Finally, a formal validation study was conducted to assess the psychometric properties of the CD-QOL.
The final CD-QOL has 20 items across four clinically relevant subscales (Limitations, Dysphoria, Health Concerns, and Inadequate Treatment). The CD-QOL has high internal consistency, reliability, and psychometric validation indicates both convergent and discriminate validity.
The CD-QOL is a reliable and valid measure of coeliac disease related QOL. As a new disease-specific instrument, it is likely to be a useful tool for evaluating patients with this disorder. Aliment Pharmacol Ther 31 , 666–675 Summary Background Previous studies on coeliac disease (CD)‐related quality of life (QOL) have been limited by their use of a ‘generic’ rather than coeliac disease‐specific assessment instruments. Aim To develop and psychometrically validate a new coeliac disease‐specific instrument, the CD‐QOL. Methods Through a series of focus groups, we elicited items from patients that related to the specific nature of their disease and its impact on their basic needs. Through expert review, cognitive debriefing with patients and pilot testing, a scale was developed, refined and administered to 387 patients on a gluten‐free diet from both community‐based support groups and a tertiary care referral centre. Finally, a formal validation study was conducted to assess the psychometric properties of the CD‐QOL. Results The final CD‐QOL has 20 items across four clinically relevant subscales (Limitations, Dysphoria, Health Concerns, and Inadequate Treatment). The CD‐QOL has high internal consistency, reliability, and psychometric validation indicates both convergent and discriminate validity. Conclusions The CD‐QOL is a reliable and valid measure of coeliac disease related QOL. As a new disease‐specific instrument, it is likely to be a useful tool for evaluating patients with this disorder. Aliment Pharmacol Ther 31, 666–675 Summary Background Previous studies on coeliac disease (CD)‐related quality of life (QOL) have been limited by their use of a ‘generic’ rather than coeliac disease‐specific assessment instruments. Aim To develop and psychometrically validate a new coeliac disease‐specific instrument, the CD‐QOL. Methods Through a series of focus groups, we elicited items from patients that related to the specific nature of their disease and its impact on their basic needs. Through expert review, cognitive debriefing with patients and pilot testing, a scale was developed, refined and administered to 387 patients on a gluten‐free diet from both community‐based support groups and a tertiary care referral centre. Finally, a formal validation study was conducted to assess the psychometric properties of the CD‐QOL. Results The final CD‐QOL has 20 items across four clinically relevant subscales (Limitations, Dysphoria, Health Concerns, and Inadequate Treatment). The CD‐QOL has high internal consistency, reliability, and psychometric validation indicates both convergent and discriminate validity. Conclusions The CD‐QOL is a reliable and valid measure of coeliac disease related QOL. As a new disease‐specific instrument, it is likely to be a useful tool for evaluating patients with this disorder. BACKGROUNDPrevious studies on coeliac disease (CD)-related quality of life (QOL) have been limited by their use of a 'generic' rather than coeliac disease-specific assessment instruments.AIMTo develop and psychometrically validate a new coeliac disease-specific instrument, the CD-QOL.METHODSThrough a series of focus groups, we elicited items from patients that related to the specific nature of their disease and its impact on their basic needs. Through expert review, cognitive debriefing with patients and pilot testing, a scale was developed, refined and administered to 387 patients on a gluten-free diet from both community-based support groups and a tertiary care referral centre. Finally, a formal validation study was conducted to assess the psychometric properties of the CD-QOL.RESULTSThe final CD-QOL has 20 items across four clinically relevant subscales (Limitations, Dysphoria, Health Concerns, and Inadequate Treatment). The CD-QOL has high internal consistency, reliability, and psychometric validation indicates both convergent and discriminate validity.CONCLUSIONSThe CD-QOL is a reliable and valid measure of coeliac disease related QOL. As a new disease-specific instrument, it is likely to be a useful tool for evaluating patients with this disorder. |
Author | DORN, S. D. MINAYA, M. T. DROSSMAN, D. A. LEE, A. LESERMAN, J. HU, Y. MORRIS, C. B. BANGDIWALA, S. I. GREEN, P. H. R. HERNANDEZ, L. LEWIS, S. |
Author_xml | – sequence: 1 givenname: S. D. surname: DORN fullname: DORN, S. D. – sequence: 2 givenname: L. surname: HERNANDEZ fullname: HERNANDEZ, L. – sequence: 3 givenname: M. T. surname: MINAYA fullname: MINAYA, M. T. – sequence: 4 givenname: C. B. surname: MORRIS fullname: MORRIS, C. B. – sequence: 5 givenname: Y. surname: HU fullname: HU, Y. – sequence: 6 givenname: J. surname: LESERMAN fullname: LESERMAN, J. – sequence: 7 givenname: S. surname: LEWIS fullname: LEWIS, S. – sequence: 8 givenname: A. surname: LEE fullname: LEE, A. – sequence: 9 givenname: S. I. surname: BANGDIWALA fullname: BANGDIWALA, S. I. – sequence: 10 givenname: P. H. R. surname: GREEN fullname: GREEN, P. H. R. – sequence: 11 givenname: D. A. surname: DROSSMAN fullname: DROSSMAN, D. A. |
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Summary
Background Previous studies on coeliac disease (CD)‐related quality of life (QOL) have been limited by their use of... Previous studies on coeliac disease (CD)-related quality of life (QOL) have been limited by their use of a 'generic' rather than coeliac disease-specific... Aliment Pharmacol Ther 31 , 666–675 Summary Background Previous studies on coeliac disease (CD)‐related quality of life (QOL) have been limited by their use... BACKGROUNDPrevious studies on coeliac disease (CD)-related quality of life (QOL) have been limited by their use of a 'generic' rather than coeliac... |
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SubjectTerms | Adolescent Adult Aged Aged, 80 and over Biological and medical sciences Celiac Disease - psychology Digestive system Female Focus Groups Gastroenterology. Liver. Pancreas. Abdomen Health Status Humans Male Medical sciences Middle Aged Other diseases. Semiology Pharmacology. Drug treatments Psychometrics - standards Quality of Life Reproducibility of Results Stomach. Duodenum. Small intestine. Colon. Rectum. Anus Surveys and Questionnaires - standards |
Title | The development and validation of a new coeliac disease quality of life survey (CD‐QOL) |
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