The Cystic Fibrosis Foundation Patient Registry as a tool for use in quality improvement

BMJ Quality and Safety

Volumn 23, Issue SUPPL1, 2014, Pages

  Schechter, Michael S ^a   Fink, Aliza K ^b   Homa, Karen ^c   Goss, Christopher H ^d  

^a VIRGINIA COMMONWEALTH UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b CYSTIC FIBROSIS FOUNDATION   (United States)

^c DARTMOUTH HITCHCOCK MEDICAL CENTER   (United States)

^d UNIVERSITY OF WASHINGTON   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CYSTIC FIBROSIS; CYSTIC FIBROSIS FOUNDATION PATIENT REGISTRY; HEALTH CARE; HEALTH CARE ORGANIZATION; HUMAN; KNOWLEDGE; PATIENT CARE; REGISTRATION; TOTAL QUALITY MANAGEMENT; DECISION SUPPORT SYSTEM; FEMALE; HEALTH CARE DELIVERY; MALE; NON PROFIT ORGANIZATION; OUTCOME ASSESSMENT; REGISTER; STANDARDS; UNITED STATES;

CYSTIC FIBROSIS; DECISION MAKING, COMPUTER-ASSISTED; DELIVERY OF HEALTH CARE; FEMALE; FOUNDATIONS; HUMANS; MALE; OUTCOME ASSESSMENT (HEALTH CARE); QUALITY IMPROVEMENT; REGISTRIES; UNITED STATES;

EID: 84896501109     PISSN: 20445415     EISSN: None     Source Type: Journal    
DOI: 10.1136/bmjqs-2013-002378     Document Type: Article

References (35)

1. Graub E, Graub M. Origin and development of the cystic fibrosis foundation. In: Doershuk CF. ed Cystic fibrosis in the 20th century. Cleveland, OH: AM Publishing, Ltd., 2001:149-63.
2. Warwick WJ, Pogue RE. Cystic fibrosis. An expanding challenge for internal medicine. JAMA 1977;238:2159-62.
3. Cystic Fibrosis Foundation. Cystic Fibrosis Foundation Patient Registry. 2011 Annual Data Report. Bethesda, Maryland, 2012.
4. Warwick WJ. Center directors remember: Minnesota. In: Doershuk CF, ed. Cystic fibrosis in the 20th century. Cleveland: AM Publishing, Ltd., 2001:315-34.
5. Kulich M, Rosenfeld M, Goss CH, et al. Improved survival among young patients with cystic fibrosis. J Pediatr 2003;142:631-6.
6. Goss CH, Newsom SA, Schildcrout JS, et al. Effect of ambient air pollution on pulmonary exacerbations and lung function in cystic fibrosis. Am J Respir Crit Care Med 2004;169:816-21.
7. Dasenbrook EC, Checkley W, Merlo CA, et al. Association between respiratory tract methicillin-resistant Staphylococcus aureus and survival in cystic fibrosis. JAMA 2010;303:2386-92.
8. Goss CH, Mayer-Hamblett N, Aitken ML, et al. Association between Stenotrophomonas maltophilia and lung function in cystic fibrosis. Thorax 2004;59:955-9.
9. Liou TG, Adler FR, Fitzsimmons SC, et al. Predictive 5-year survivorship model of cystic fibrosis. Am J Epidemiol 2001;153:345-52.
10. Quon BS, Mayer-Hamblett N, Aitken ML, et al. Risk factors for chronic kidney disease in adults with cystic fibrosis. Am J Respir Crit Care Med 2011;184:1147-52.
11. Schechter MS, Shelton BJ, Margolis PA, et al. The association of socioeconomic status with outcomes in cystic fibrosis patients in the United States. Am J Respir Crit Care Med 2001;163:1331-7.
12. Emerson J, Rosenfeld M, McNamara S, et al. Pseudomonas aeruginosa and other predictors of mortality and morbidity in young children with cystic fibrosis. Pediatr Pulmonol 2002;34:91-100.
13. Rosenfeld M, Davis R, Fitz Simmons R, et al. Gender gap in cystic fibrosis mortality. Am J Epidemiol 1997;145:794-803.
14. Gawande A. The bell curve. New Yorker 2004:82-91.
15. Quinton HB, O'Connor GT. Current issues in quality improvement in cystic fibrosis. Clin Chest Med 2007;28:459-72.
16. O'Connor GT, Quinton HB, Kahn R, et al. Case-mix adjustment for evaluation of mortality in cystic fibrosis. Pediatr Pulmonol 2002;33:99-105.
17. O'Connor GT, Quinton HB, Kneeland T, et al. Median household income and mortality rate in cystic fibrosis. Pediatrics 2003;111(4 Pt 1):e333-9.
18. Antos NJ, Quintero DR, Walsh-Kelly CM, et al. Improving inpatient cystic fibrosis pulmonary exacerbation care-two success stories. BMJ Qual Saf 2014;23:i33-41.
19. Britton LJ, Thrasher S, Gutierrez H. Creating a culture of improvement: experience of a pediatric cystic fibrosis center. J Nurs Care Qual 2008;23:115-20. quiz 21-2.
20. Ernst MM, Wooldridge JL, Conway E, et al. Using quality improvement science to implement a multidisciplinary behavioral intervention targeting pediatric inpatient airway clearance. J Pediatr Psychol 2010;35:14-24.
21. Kraynack NC, McBride JT. Improving care at cystic fibrosis centers through quality improvement. Semin Respir Crit Care Med 2009;30:547-58.
22. Leonard A, Davis E, Rosenstein BJ, et al. Description of a standardized nutrition classification plan and its relation to nutritional outcomes in children with cystic fibrosis. J Pediatr Psychol 2009;35:116-23.
23. McPhail GL, Weiland J, Acton JD, et al. Improving evidence-based care in cystic fibrosis through quality improvement. Arch Pediatr Adolesc Med 2010;164:957-60.
24. Nelson EC, Batalden PB, Homa K, et al. Microsystems in health care: part 2. Creating a rich information environment. Jt Comm J Qual Saf 2003;29:5-15.
25. Stern M, Niemann N, Wiedemann B, et al. Benchmarking improves quality in cystic fibrosis care: a pilot project involving 12 centres. Int J Qual Health Care 2011;23:349-56.
26. Corey M, McLaughlin FJ, Williams M, et al. A comparison of survival, growth, and pulmonary function in patients with cystic fibrosis in Boston and Toronto. J Clin Epidemiol 1988;41:583-91.
27. Martin B, Schechter MS, Jaffe A, et al. Comparison of the US and Australian cystic fibrosis registries: the impact of newborn screening. Pediatrics 2012;129:e348-55.
28. Goss CH, Macneill SJ, Quinton H, et al. Children and young adults in the US have improved lung function compared to the UK. Pediatr Pulmonol 2012;35:378.
29. Ren CL, Pasta DJ, Rasouliyan L, et al. Relationship between inhaled corticosteroid therapy and rate of lung function decline in children with cystic fibrosis. J Pediatr 2008;153:746-51.
30. Konstan MW, Schluchter MD, Xue W, et al. Clinical use of ibuprofen is associated with slower FEV1 decline in children with cystic fibrosis. Am J Respir Crit Care Med 2007;176:1084-9.
31. Sawicki GS, Signorovitch JE, Zhang J, et al. Reduced mortality in cystic fibrosis patients treated with tobramycin inhalation solution. Pediatr Pulmonol 2012;47:44-52.
32. Vandyke RD, McPhail GL, Huang B, et al. Inhaled tobramycin effectively reduces FEV1 decline in cystic fibrosis. An instrumental variables analysis. Ann Am Thorac Soc 2013;10:205-12.
33. Bosco JL, Silliman RA, Thwin SS, et al. A most stubborn bias: no adjustment method fully resolves confounding by indication in observational studies. J Clin Epidemiol 2010;63:64-74.
34. Shah BR, Drozda J, Peterson ED. Leveraging observational registries to inform comparative effectiveness research. Am Heart J 2010;160:8-15.
35. Cystic Fibrosis Foundation. Cystic fibrosis foundation patient registry 2012. Annual Data Report. Bethesda, Maryland, 2013.