References for Appendix F

Please note that these references are independent of the main report and may have different reference numbers.

1.

Huang NN, Schidlow DV, Szatrowski TH, et al. Clinical features, survival rate, and prognostic factors in young adults with cystic fibrosis. Am J Med. 1987;82(5):871–879. [PubMed: 3578357]

2.

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(6):583–591. [PubMed: 3260274]

3.

Kerem E, Reisman J, Corey M, et al. Prediction of mortality in patients with cystic fibrosis. N Engl J Med. 1992;326(18):1187–91. [PubMed: 1285737]

4.

Nixon PA, Orenstein DM, Kelsey SF, et al. The prognostic value of exercise testing in patients with cystic fibrosis. N Engl J Med. 1992;327(25):1785–1788. [PubMed: 1435933]

5.

Sharples L, Hathaway T, Dennis C, et al. Prognosis of patients with cystic fibrosis awaiting heart and lung transplantation. J Heart Lung Transplant. 1993;12(4):669–674. [PubMed: 8369328]

6.

Ciriaco P, Egan TM, Cairns EL, et al. Analysis of cystic fibrosis referrals for lung transplantation. Chest. 1995;107(5):1323–1327. [PubMed: 7750326]

7.

Corey M, Farewell V. Determinants of mortality from cystic fibrosis in Canada, 1970–1989. Am J Epidemiol. 1996;143(10):1007–1017. [PubMed: 8629607]

8.

Corey M, Edwards L, Levison H, et al. Longitudinal analysis of pulmonary function decline in patients with cystic fibrosis. J Pediatr. 1997;131(6):809–814. [PubMed: 9427882]

9.

Hayllar KM, Williams SG, Wise AE, et al. A prognostic model for the prediction of survival in cystic fibrosis. Thorax. 1997;52(4):313–317. [PMC free article: PMC1758530] [PubMed: 9196511]

10.

Moorcroft AJ, Dodd ME, Webb AK. Exercise testing and prognosis in adult cystic fibrosis. Thorax. 1997;52(3):291–293. [PMC free article: PMC1758504] [PubMed: 9093351]

11.

Rosenfeld M, Davis R, FitzSimmons S, et al. Gender gap in cystic fibrosis mortality. Am J Epidemiol. 1997;145(9):794–803. [PubMed: 9143209]

12.

Bell SC, Bowerman AR, Davies CA, et al. Nutrition in adults with cystic fibrosis. Clin Nutr. 1998;17(5):211–215. [PubMed: 10205341]

13.

Milla CE, Warwick WJ. Risk of death in cystic fibrosis patients with severely compromised lung function. Chest. 1998;113(5):1230–1234. [PubMed: 9596299]

14.

Venuta F, Rendina EA, De Giacomo T, et al. Timing and priorities for cystic fibrosis patients candidates to lung transplantation. Eur J Pediatr Surg. 1998;8(5):274–277. [PubMed: 9825236]

15.

Robinson W, Waltz DA. FEV(1) as a guide to lung transplant referral in young patients with cystic fibrosis. Pediatr Pulmonol. 2000;30(3):198–202. [PubMed: 10973037]

16.

Vizza CD, Yusen RD, Lynch JP, et al. Outcome of patients with cystic fibrosis awaiting lung transplantation. Am J Respir Crit Care Med. 2000;162(3 Pt 1):819–825. [PubMed: 10988089]

17.

Liou TG, Adler FR, Fitzsimmons SC, et al. Predictive 5-year survivorship model of cystic fibrosis. Am J Epidemiol. 2001;153(4):345–352. [PMC free article: PMC2198936] [PubMed: 11207152]

18.

Sharma R, Florea VG, Bolger AP, et al. Wasting as an independent predictor of mortality in patients with cystic fibrosis. Thorax. 2001;56(10):746–750. [PMC free article: PMC1745930] [PubMed: 11562511]

19.

Mayer-Hamblett N, Rosenfeld M, Emerson J, et al. Developing cystic fibrosis lung transplant referral criteria using predictors of 2-year mortality. Am J Respir Crit Care Med. 2002;166(12 Pt 1):1550–1555. [PubMed: 12406843]

20.

Schaedel C, de Monestrol I, Hjelte L, et al. Predictors of deterioration of lung function in cystic fibrosis. Pediatr Pulmonol. 2002;33(6):483–491. [PubMed: 12001283]

21.

Stanchina ML, Tantisira KG, Aquino SL, et al. Association of lung perfusion disparity and mortality in patients with cystic fibrosis awaiting lung transplantation. J Heart Lung Transplant. 2002;21(2):217–225. [PubMed: 11834350]

22.

Vedam H, Moriarty C, Torzillo PJ, et al. Improved outcomes of patients with cystic fibrosis admitted to the intensive care unit. J Cyst Fibros. 2004;3(1):8–14. [PubMed: 15463881]

23.

Ellaffi M, Vinsonneau C, Coste J, et al. One-year outcome after severe pulmonary exacerbation in adults with cystic fibrosis. Am J Respir Crit Care Med. 2005;171(2):158–164. [PubMed: 15502116]

24.

Pianosi P, Leblanc J, Almudevar A. Peak oxygen uptake and mortality in children with cystic fibrosis. Thorax. 2005;60(1):50–54. [PMC free article: PMC1747160] [PubMed: 15618583]

25.

Belkin RA, Henig NR, Singer LG, et al. Risk factors for death of patients with cystic fibrosis awaiting lung transplantation. Am J Respir Crit Care Med. 2006;173(6):659–666. [PMC free article: PMC2662949] [PubMed: 16387803]

26.

Texereau J, Jamal D, Choukroun G, et al. Determinants of mortality for adults with cystic fibrosis admitted in Intensive Care Unit: a multicenter study. Respir Res. 2006;7:14. [PMC free article: PMC1403757] [PubMed: 16438722]

27.

Courtney JM, Bradley J, Mccaughan J, et al. Predictors of mortality in adults with cystic fibrosis. Pediatr Pulmonol. 2007;42(6):525–532. [PubMed: 17469153]

28.

Rosenthal M. Annual assessment spirometry, plethysmography, and gas transfer in cystic fibrosis: do they predict death or transplantation. Pediatr Pulmonol. 2008;43(10):945–952. [PubMed: 18781653]

29.

Kraemer R, Rudeberg A, Hadorn B, et al. Relative underweight in cystic fibrosis and its prognostic value. Acta Paediatr Scand. 1978;67(1):33–37. [PubMed: 626067]

30.

Beker LT, Russek-Cohen E, Fink RJ. Stature as a prognostic factor in cystic fibrosis survival. J Am Diet Assoc. 2001;101(4):438–442. [PubMed: 11320950]

31.

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(2):91–100. [PubMed: 12112774]

32.

Banjar H. Morbidity and mortality data of cystic fibrosis patients. Saudi Med J. 2003;24(7):730–735. [PubMed: 12883603]

33.

Kadikar A, Maurer J, Kesten S. The six-minute walk test: a guide to assessment for lung transplantation. J Heart Lung Transplant. 1997;16(3):313–9. [PubMed: 9087875]

34.

Orenstein DM, Nixon PA, Ross EA, et al. The quality of well-being in cystic fibrosis. Chest. 1989;95:344–347. [PubMed: 2914486]

35.

Czyzewski DI, Mariotto MJ, Bartholomew LK, et al. Measurement of quality of well being in a child and adolescent cystic fibrosis population. Med Care. 1994;32(9):965–972. [PubMed: 8090048]

36.

Congleton J, Hodson ME, Duncan-Skingle F. Quality of life in adults with cystic fibrosis. Thorax. 1996;51(9):936–940. [PMC free article: PMC472619] [PubMed: 8984707]

37.

de Jong W, Kaptein AA, van der Schans CP, et al. Quality of life in patients with cystic fibrosis. Pediatr Pulmonol. 1997;23(2):95–100. [PubMed: 9065946]

38.

Staab D, Wenninger K, Gebert N, et al. Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity? Thorax. 1998;53(9):727–731. [PMC free article: PMC1745310] [PubMed: 10319053]

39.

Johnson JA, Connolly M, Zuberbuhler P, et al. Health-related quality of life for adults with cystic fibrosis: a regression approach to assessing the impact of recombinant human DNase. Pharmacotherapy. 2000;20(10):1167–1174. [PubMed: 11034039]

40.

Abbott J, Baumann U, Conway S, et al. Cross cultural differences in health related quality of life in adolescents with cystic fibrosis. Disabil Rehabil. 2001;23(18):837–844. [PubMed: 11763280]

41.

Powers PM, Gerstle R, Lapey A. Adolescents with cystic fibrosis: family reports of adolescent health-related quality of life and forced expiratory volume in one second. Pediatrics. 2001;107(5):E70. [PubMed: 11331720]

42.

Gee L, Abbott J, Conway SP, Etherington C, Webb AK. Quality of life in cystic fibrosis: the impact of gender, general health perceptions and disease severity. J Cyst Fibros. 2003;2(4):206–213. [PubMed: 15463875]

43.

Gee L, Abbott J, Hart A, et al. Associations between clinical variables and quality of life in adults with cystic fibrosis. J Cyst Fibros. 2005;4(1):59–66. [PubMed: 15752683]

44.

Koscik RL, Douglas JA, Zaremba K, et al. Quality of life of children with cystic fibrosis. J Pediatr. 2005;147(3 Suppl):S64–S68. [PubMed: 16202786]

45.

Quittner AL, Buu A, Messer MA, et al. Development and validation of The Cystic Fibrosis Questionnaire in the United States: a health-related quality-of-life measure for cystic fibrosis. Chest. 2005;128(4):2347–2354. [PubMed: 16236893]

46.

Goldbeck L, Zerrer S, Schmitz TG. Monitoring quality of life in outpatients with cystic fibrosis: feasibility and longitudinal results. J Cyst Fibros. 2007;6(3):171–178. [PubMed: 16877050]

47.

Riekert KA, Bartlett SJ, Boyle MP, et al. The association between depression, lung function, and health-related quality of life among adults with cystic fibrosis. Chest. 2007;132(1):231–237. [PubMed: 17625085]

48.

Havermans T, Colpaert K, Dupont LJ. Quality of life in patients with Cystic Fibrosis: association with anxiety and depression. J Cyst Fibros. 2008;7(6):581–584. [PubMed: 18692444]

49.

Havermans T, Colpaert K, Vanharen L, et al. Health related quality of life in cystic fibrosis: To work or not to work? J Cyst Fibros. 2009;8(3):218–223. [PubMed: 19328745]

50.

Koscik RL, Shoff S, Lai H, et al. Is recovery of birth weight Z-score within 2 years of diagnosis related to quality of life in later childhood [abstract] Pediatr Pulmonol. 2006;41(Suppl 29):400.

51.

Aris RM, Renner JB, Winders AD, et al. Increased rate of fractures and severe kyphosis: sequelae of living into adulthood with cystic fibrosis. Ann Intern Med. 1998;128(3):186–193. [PubMed: 9454526]