Psychometric evaluation of the cystic fibrosis questionnaire-revised in a national sample

Quality of Life Research

Volumn 21, Issue 7, 2012, Pages 1267-1278

  Quittner, Alexandra L ^a   Sawicki, Gregory S ^b   McMullen, Ann ^c   Rasouliyan, Lawrence ^d   Pasta, David J ^d   Yegin, Ashley ^e   Konstan, Michael W ^f  

^a UNIVERSITY OF MIAMI   (United States)

^b BOSTON CHILDREN S HOSPITAL   (United States)

^c UNIVERSITY OF ROCHESTER MEDICAL CENTER   (United States)

^d ICON Late Phase and Outcomes Research   (United States)

^e GENENTECH INC   (United States)

^f CASE WESTERN RESERVE UNIVERSITY   (United States)

Author keywords

Cystic fibrosis; Health related quality of life; Patient reported outcomes; Psychometric properties

Indexed keywords

ADOLESCENT; ADULT; AGED; ARTICLE; CHILD; CLINICAL TRIAL; CYSTIC FIBROSIS; FEMALE; HEALTH STATUS; HOSPITALIZATION; HUMAN; INSTRUMENTATION; LONGITUDINAL STUDY; LUNG; MALE; MIDDLE AGED; MULTICENTER STUDY; PATHOPHYSIOLOGY; PSYCHOMETRY; QUALITY OF LIFE; SICKNESS IMPACT PROFILE; UNITED STATES; VALIDATION STUDY;

ADOLESCENT; ADULT; AGED; CHILD; CYSTIC FIBROSIS; FEMALE; HEALTH STATUS; HUMANS; LONGITUDINAL STUDIES; LUNG; MALE; MIDDLE AGED; PSYCHOMETRICS; QUALITY OF LIFE; SEVERITY OF ILLNESS INDEX; SICKNESS IMPACT PROFILE; UNITED STATES; YOUNG ADULT;

EID: 84867065315     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-011-0036-z     Document Type: Article

References (33)

1. Center for Drug Evaluation and Research. (2009). Guidance for industry. Patient-reported outcome measures: Use in medical product development to support labeling claims. US Department of Health and Human Services, Food and Drug Administration. December 2009. http://www.fda.gov/downloads/Drugs/Guidance ComplianceRegulatoryInformation/Guidances/UCM193282.pdf. Accessed July 1, 2010.
2. Fayers, P., & Hays, R. (Eds.). (2005). Assessing quality of life in clinical trials: Methods, practice (2nd ed.). New York: Oxford University Press.
3. Retsch-Bogart, G. Z., Quittner, A. L., Gibson, R. L., Oermann, C. M., McCoy, K. S., Montgomery, A. B., et al. (2009). Efficacy and safety of inhaled Aztreonam Lysine for airway Pseudomonas in cystic fibrosis. Chest, 135(5), 1223-1232.
4. Goss, C. H., & Quittner, A. L. (2007). Patient-reported outcomes in cystic fibrosis. Proceedings of the American Thoracic Society, 4(4), 378-386.
5. Quittner, A. L., Modi, A., & Cruz, I. (2008). Systematic review of health-related quality of life measures for children with respiratory conditions. Paediatric Respiratory Reviews, 9(3), 220-232.
6. Quittner, A. L., Modi, A. C., Wainwright, C., Otto, K., Kirihara, J., & Montgomery, A. B. (2009). Determination of the minimal clinically important difference scores for the Cystic Fibrosis Questionnaire-revised respiratory symptom scale in two populations of patients with cystic fibrosis and chronic Pseudomonas aeruginosa airway infection. Chest, 135(6), 1610-1618.
7. Quittner, A. L., Buu, A., Messer, M. A., Modi, A. C., & Watrous, M. (2005). Development and validation of the cystic fibrosis Questionnaire in the United States: A health-related quality-oflife measure for cystic fibrosis. Chest, 128(4), 2347-2354.
8. Kaplan, R. M., Anderson, J. P., Wu, A. W., Mathews, W. C., Kozin, F., & Orenstein, D. (1989). The quality of well-being scale. Applications in AIDS, cystic fibrosis, and arthritis. Medical Care, 27(3 Suppl), S27-S43.
9. Ware, J. E., Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473-483.
10. Palermo, T. M., Long, A. C., Lewandowski, A. S., Drotar, D., Quittner, A. L., & Walker, L. S. (2008). Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology. Journal of Pediatric Psychology, 33, 983-996.
11. Scoggins, J. F., & Patrick, D. L. (2009). The use of patientreported outcomes instruments in registered clinical trials: Evidence from ClinicalTrials.gov. Contemporary Clinical Trials, 30(4), 289-292.
12. Cystic Fibrosis Foundation Patient Registry. (2007). Annual data report 2007. Bethesda, MD: Cystic Fibrosis Foundation.
13. Quittner, A. L., Barker, D. H., Snell, C., Grimley, M. E., Marciel, K. K., & Cruz, I. (2008). Prevalence and impact of depression in cystic fibrosis. Current Opinion in Pulmonary Medicine, 14(6), 582-588.
14. Smith, B. A., Modi, A. C., Quittner, A. L., & Wood, B. L. (2010). Depressive symptoms in children with cystic fibrosis and parents and its effects on adherence to airway clearance. Pediatric Pulmonology, 45(8), 756-763.
15. Rosenfeld, M., Davis, R., FitzSimmons, S., Pepe, M., & Ramsey, B. (1997). Gender gap in cystic fibrosis mortality. American Journal of Epidemiology, 145(9), 794-803.
16. Courtney, J. M., Bradley, J., McCaughan, J., O'Connor, T. M., Shortt, C., Bredin, C. P., et al. (2007). Predictors of mortality in adults with cystic fibrosis. Pediatric Pulmonology, 42(6), 525-532.
17. Briesacher, B. A., Quittner. A. L., Fouayzi, H., Zhang, J., & Swensen, A. (2011). Nationwide trends in the medical care costs of privately-insured patients with cystic fibrosis, 2001-2007. Pediatric Pulmonology (in press).
18. Sawicki, G. S., Sellers, D. E., & Robinson, W. M. (2009). High treatment burden in adults with cystic fibrosis: Challenges to disease self-management. Journal of Cystic Fibrosis, 8(2), 91-96.
19. Modi, A. C., & Quittner, A. L. (2003). Validation of a diseasespecific measure of health-related quality of life for children with cystic fibrosis. Journal of Pediatric Psychology, 28(8), 535-545.
20. Henry, B., Aussage, P., Grosskopf, C., & Goehrs, J. M. (2003). Development of the Cystic Fibrosis Questionnaire (CFQ) for assessing quality of life in pediatric and adult patients. Quality of Life Research, 12(1), 63-76.
21. Quittner, A. L., Sweeny, S., Watrous, M., Munzenberger, P., Bearss, K., Gibson Nitza, A., et al. (2000). Translation and linguistic validation of a disease-specific quality of life measure for cystic fibrosis. Journal of Pediatric Psychology, 25(6), 403-414.
22. McCoy, K. S., Quittner, A. L., Oermann, C. M., Gibson, R. L., Retsch-Bogart, G. Z., & Montgomery, A. B. (2008). Inhaled aztreonam lysine for chronic airway Pseudomonas aeruginosa in cystic fibrosis. American Journal of Respiratory and Critical Care Medicine, 178(9), 921-928.
23. Donaldson, S. H., Bennett, W. D., Zeman, K. L., Knowles, M. R., Tarran, R., & Boucher, R. C. (2006). Mucus clearance and lung function in cystic fibrosis with hypertonic saline. New England Journal of Medicine, 354(3), 241-250.
24. Elkins, M. R., Robinson, M., Rose, B. R., Harbour, C., Moriarty, C. P., Marks, G. B., et al. (2006). A controlled trial of long-term inhaled hypertonic saline in patients with cystic fibrosis. New England Journal of Medicine, 354(3), 229-240.
25. Accurso, F. J., Rowe, S. M., Clancy, J. P., Boyle, M. P., Dunitz, J. M., et al. (2010). Effect of VX-770 in persons with cystic fibrosis and the G551D-CFTR mutation. New England Journal of Medicine, 363, 1991-2003.
26. Cystic Fibrosis Foundation. (2010). Cystic fibrosis foundation patient registry: 2009 annual data report. Bethesda, MD: Cystic Fibrosis Foundation.
27. Ware, J. E., Brook, R. H., Davies-Avery, A. R., Williams, K. N., Stewart, A., Rogers, W. H., et al. (1980). Conceptualization and measurement of health for adults in the health insurance study: Vol. I, model of health and methodology. Rand Corporation, Santa Monica. Pub. no. R-1987/1-HEW.
28. Martin, J. L., Ford, C. B., Dyer-Friedman, J., Tang, J., & Huffman, L. C. (2004). Patterns of agreement between parent and child ratings of emotional and behavioral problems in an outpatient clinical setting: When children endorse more problems. Journal of Developmental and Behavioral Pediatrics, 25(3), 150-155.
29. Levi, R., & Drotar, D. (1998). Measuring health-related quality of life in children and adolescents: Implications for research and practice. Mahwah, NJ: Lawrence Erlbaum Associates Publishers.
30. Havermans, T., Vreys, M., Proesmans, M., & De Boeck, C. (2006). Assessment of agreement between parents and children on health-related quality of life in children with cystic fibrosis. Child: Care, Health and Development, 32(1), 1-7.
31. Schmidt, A., Wenninger, K., Niemann, N., Wahn, U., & Staab, D. (2009). Health-related quality of life in children with cystic fibrosis: Validation of the German CFQ-R. Health and Quality of Life Outcomes, 7, 97.
32. Cruz, I., Marciel, K. K., Cheney, J., Wainwright, C., Campbell, M., & Quittner, A. L. (2009). The preschool cystic fibrosis questionnaire-revised: Initial validation results. Pediatric Pulmonology, 32(Suppl), 421 (abstract).
33. VanDevanter, D. R., Rasouliyan, L., Murphy, T. M., Morgan, W. J., Ren, C. L., Konstan, M. W., et al. (2008). Trends in the clinical characteristics of the U.S. cystic fibrosis patient population from 1995 to 2005. Pediatric Pulmonology, 43(8), 739-744.