Quality of life assessment in patients with cystic fibrosis by means of the Cystic Fibrosis Questionnaire;Avaliação da qualidade de vida de pacientes com fibrose cística por meio do Cystic Fibrosis Questionnaire

Jornal Brasileiro de Pneumologia

Volumn 37, Issue 2, 2011, Pages 184-192

  Cohen, Milena Antonelli ^a   de Oliveira Ribeiro, Maria Ângela Gonçalves ^a   Ribeiro, Antonio Fernando ^a   Ribeiro, José Dirceu ^a   Morcillo, André Moreno ^a  

^a UNIVERSITY OF CAMPINAS   (Brazil)

Author keywords

Cystic fibrosis; Quality of life; Questionnaires

Indexed keywords

EID: 79955743830     PISSN: 18063713     EISSN: 18063713     Source Type: Journal    
DOI: 10.1590/s1806-37132011000200008     Document Type: Article

References (30)

1. Castellani C, Macek M Jr, Cassiman JJ, Duff A, Massie J, Ten Kate LP,et.al. Benchmarks for cystic fibrosis carrier screening: a European consensus document. J Cyst Fibros. 2010;9(3):165-178.
2. Kerem E, Conway S, Elborn S, Heijerman H; Consensus Committee. Standards of care for patients with cystic fibrosis: a European consensus. J Cyst Fibros. 2005;4(1):7-26.
3. Ribeiro JD, Ribeiro MA, Ribeiro AF. Controversies in cystic fibrosis--from pediatrician to specialist [Article in Portuguese]. J Pediatr (Rio J). 2002;78(Suppl 2):S171-S186.
4. Havermans T, Colpaert K, Vanharen L, Dupont LJ. Health related quality of life in cystic fibrosis: To work or not to work? J Cyst Fibros. 2009;8(3):218-223.
5. Modi AC, Quittner AL. Validation of a disease-specific measure of health-related quality of life for children with cystic fibrosis. J Pediatr Psychol. 2003;28(8):535-545.
6. Tullis DE, Guyatt GH. Quality of life in cystic fibrosis. Pharmacoeconomics. 1995;8(1):23-33.
7. Abbott J, Webb K, Dodd M. Quality of life in cystic fibrosis. J R Soc Med. 1997;90(Suppl 31):37-42.
8. Quittner AL, Buu A, Messer MA, Modi AC, Watrous M. 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.
9. Goldbeck L, Schmitz TG, Henrich G, Herschbach P. Questions on life satisfaction for adolescents and adults with cystic fibrosis: development of a disease-specific questionnaire. Chest. 2003;123(1):42-48.
10. Clarke AS, Eiser C. The measurement of health-related quality of life (QOL) in pediatric clinical trials: a systematic review. Health Qual Life Outcomes. 2004;22:2-266.
11. Monti F, Lupi F, Gobbi F, Agostini F, Miano A, Gee L, et al. Validation of the Italian version of the Cystic Fibrosis Quality of Life Questionnaire (CFQoL), a disease specific measure for adults and adolescents with cystic fibrosis. J Cyst Fibros. 2008;7(2):116-122.
12. Koscik RL, Douglas JA, Zaremba K, Rock MJ, Splaingard ML, Laxova A, et al. Quality of life of children with cystic fibrosis. J Pediatr. 2005;147(3 Suppl):S64-S68.
13. Arrington-Sanders R, Yi MS, Tsevat J, Wilmott RW, Mrus JM, Britto MT. Gender differences in health-related quality of life of adolescents with cystic fibrosis. Health Qual Life Outcomes. 2006;24(4):5.
14. Rozov T, Cunha MT, Nascimento O, Quittner AL, Jardim JR. Linguistic validation of cystic fibrosis quality of life questionnaires. J Pediatr (Rio J). 2006;82(2):151-156.
15. Santos CI, Ribeiro JD, Ribeiro AF, Hessel G. Análise crítica dos escores de avaliação de gravidade da fibrose cística: Estado da arte. J Pneumol. 2004;30(3):286-298.
16. Rodrigues JC, Cardieri JM, Bussamara MH, Nakaie CM, Almeida MB, Filho LV, et al. Provas de função pulmonar em crianças e adolescentes. J Pneumol. 2002;28(Suppl 3):207-221.
17. Zar JH. Biostatistical analysis. Upper Saddle River: Prentice-Hall; 1999.
18. Abbott J, Dodd M, Gee L, Webb K. Ways of coping with cystic fibrosis: implications for treatment adherence. Disabil Rehabil. 2001;23(8):315-324.
19. Abbott J. Coping with cystic fibrosis. J R Soc Med. 2003;96(Suppl 43):42-50.
20. Epker J, Maddrey AM. Quality of life in Pediatric Patients with Cystic Fibrosis. Int J Rehabil Health. 1998;4(4):215-222.
21. 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.
22. Britto MT, Kotagal UR, Chenier T, Tsevat J, Atherton HD, Wilmott RW. Differences between adolescents' and parents' reports of health-related quality of life in cystic fibrosis. Pediatr Pulmonol. 2004;37(2):165-171.
23. Sawyer MG, Reynolds KE, Couper JJ, French DJ, Kennedy D, Martin J, et al. A two-year prospective study of the health-related quality of life of children with chronic illness--the parents' perspective. Qual Life Res. 2005;14(2):395-405.
24. Driscoll KA, Montag-Leifling K, Acton JD, Modi AC. Relations between depressive and anxious symptoms and quality of life in caregivers of children with cystic fibrosis. Pediatr Pulmonol. 2009;44(8):784-792.
25. Staab D, Wenninger K, Gebert N, Rupprath K, Bisson S, Trettin M, 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.
26. Orenstein DM, Nixon PA, Ross EA, Kaplan RM. The quality of well-being in cystic fibrosis. Chest. 1989;95(2):344-347.
27. Gee L, Abbott J, Hart A, Conway SP, Etherington C, Webb AK. Associations between clinical variables and quality of life in adults with cystic fibrosis. J Cyst Fibros. 2005;4(1):59-66.
28. Czyzewski DI, Mariotto MJ, Bartholomew LK, LeCompte SH, Sockrider MM. Measurement of quality of well being in a child and adolescent cystic fibrosis population. Med Care. 1994;32(9):965-972.
29. 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.
30. Rozov T, de Oliveira VZ, Santana MA, Adde FV, Mendes RH, Paschoal IA, et al. Dornase alpha improves the health-related quality of life among Brazilian patients with cystic fibrosis--a one-year prospective study. Pediatr Pulmonol. 2010;45(9):874-882.