Health values of adolescents with cystic fibrosis

Journal of Pediatrics

Volumn 142, Issue 2, 2003, Pages 133-140

  Yi, Michael S ^a   Britto, Maria T ^b   Wilmott, Robert W ^b   Kotagal, Uma R ^b   Eckman, Mark H ^b   Nielson, Dennis W ^b   Kociela, Vikki L ^b   Tsevat, Joel ^b  

^a UNIVERSITY OF CINCINNATI MEDICAL CENTER   (United States)

^b NONE

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT DISEASE; ADULT; AGE DISTRIBUTION; ARTICLE; CHILD HEALTH QUESTIONNAIRE; CLINICAL EXAMINATION; CYSTIC FIBROSIS; DISEASE EXACERBATION; DISEASE SEVERITY; EVALUATION; FEMALE; FORCED EXPIRATORY VOLUME; HEALTH CARE UTILIZATION; HEALTH STATUS; HEALTH UTILITIES INDEX MARK 2; HUMAN; INDIVIDUALITY; LIFE EXPECTANCY; MAJOR CLINICAL STUDY; MALE; MULTIVARIATE ANALYSIS; POPULATION RISK; PREDICTION; PRIORITY JOURNAL; QUESTIONNAIRE; RISK ASSESSMENT; RISK FACTOR; SCHOOL CHILD; SCORING SYSTEM; SELF CONCEPT; STANDARD GAMBLE; STATISTICAL SIGNIFICANCE; TIME TRADEOFF; VISUAL ANALOG SCALE;

EID: 0037323906     PISSN: 00223476     EISSN: None     Source Type: Journal    
DOI: 10.1067/mpd.2003.51     Document Type: Article

References (51)

1. Rosenstein BJ, Cutting GR. The diagnosis of cystic fibrosis: a consensus statement: Cystic Fibrosis Foundation Consensus Panel. J Pediatr 1998;132:589-95.
2. Elborn JS, Shale DJ, Britton JR. Cystic fibrosis: current survival and population estimates to the year 2000. Thorax 1991;46:881-5.
3. Munzenberger PJ, Van Wagnen CA, Abdulhamid I, Walker PC. Quality of life as a treatment outcome in patients with cystic fibrosis. Pharmacotherapy 1999;19:393-8.
4. 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:E70.
5. Tsevat J, Weeks JC, Guadagnoli E, Tosteson AN, Mangione CM, Pliskin JS, et al. Using health-related quality-of-life information: clinical encounters, clinical trials, and health policy. J Gen Intern Med 1994;9:576-82.
6. Tsevat J. What do utilities measure? Med Care 2000;38(9 Suppl):II160-4.
7. Britto MT, Kotagal UR, Hornung RW, Atherton HD, Tsevat J, Wilmott RW. Impact of recent pulmonary exacerbations on quality of life in patients with cystic fibrosis. Chest 2002;121:64-72.
8. Gold MR, Patrick DL, Torrance GW, Fryback DG, Hadorn DC, Kamlet MS, et al. Identifying and Valuing Outcomes. In: Gold M, Siegel J, Russell L, Weinstein M, editors. Cost-effectiveness in health and medicine. New York, NY: Oxford University Press; 1996. p. 82-134.
9. Torrance GW. Measurement of health state utilities for economic appraisal. J Health Econ 1986;5:1-30.
10. Torrance GW, Furlong W, Feeny D, Boyle M. Multi-attribute preference functions. Health Utilities Index. Pharmacoeconomics 1995;7:503-20.
11. Saigal S, Feeny D, Rosenbaum P, Furlong W, Burrows E, Stoskopf B. Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. JAMA 1996;276:453-9.
12. Juniper EF, Guyatt GH, Feeny DH, Griffith LE, Ferrie PJ. Minimum skills required by children to complete health-related quality of life instruments for asthma: comparison of measurement properties. Eur Respir J 1997;10:2285-94.
13. Ramsey BW. Management of pulmonary disease in patients with cystic fibrosis. N Engl J Med 1996;335:179-88.
14. Torrance GW, Feeny D. Utilities and quality-adjusted life years. Int J Technol Assess Health Care 1989;5:559-75.
15. Landgraf JM, Abetz L, Ware JE. The CHQ user's manual. 1st ed. Boston (MA): The Health Institute, New England Medical Center; 1996.
16. Torrance GW, Feeny DH, Furlong WJ, Barr RD, Zhang Y, Wang Q. Multiattribute utility function for a comprehensive health status classification system: Health Utilities Index Mark 2. Med Care 1996;34:702-22.
17. Gilliam F. Health outcomes in persons with epilepsy. Neurol Clin 2001;19:465-75.
18. Sawyer M, Antoniou G, Toogood I, Rice M. A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer. Int J Cancer Suppl 1999;12:39-45.
19. Homer C, Susskind O, Alpert HR, Owusu M, Schneider L, Rappaport LA, et al. An evaluation of an innovative multimedia educational software program for asthma management: report of a randomized, controlled trial. Pediatrics 2000;106:210-5.
20. Halpern SD, Bradley CS, Ming ME, Yang YX. Reliability of the health utilities index-mark 2 and its applicability to survivors of orthotopic liver transplantation. Liver Transpl 2001;7:282-3.
21. Kennedy CR, Leyland K. Comparison of screening instruments for disability and emotional/behavioral disorders with a generic measure of health-related quality of life in survivors of childhood brain tumors. Int J Cancer Suppl 1999;12:106-11.
22. Grossman R, Mukherjee J, Vaugban D, Eastwood C, Cook R, LaForge J, et al. A 1-year community-based health economic study of ciprofloxacin vs usual antibiotic treatment in acute exacerbations of chronic bronchitis: the Canadian Ciprofloxacin Health Economic Study Group. Chest 1998;113:131-41.
23. Tsevat J, Sherman SN, McElwee JA, Mandell KL, Simbartl LA, Sonnenberg FA, et al. The will to live among HIV-infected patients. Ann Intern Med 1999;131:194-8.
24. Chapman GB, Sonnenberg FA. Decision making in health care: theory, psychology, and applications. New York: Cambridge University Press; 2000.
25. FitzSimmons SC. The changing epidemiology of cystic fibrosis. J Pediatr 1993;122:1-9.
26. Lenert LA, Cher DJ, Goldstein MK, Bergen MR, Garber A. The effect of search procedures on utility elicitations. Med Decis Making 1998;18:76-83.
27. Bjerager M, Steensberg J, Greisen G. Quality of life among young adults born with very low birthweights. Acta Paediatr 1995;84:1339-43.
28. Appleton PL, Minchom PE, Ellis NC, Elliott CE, Boll V, Jones P. The self-concept of young people with spina bifida: a population-based study. Dev Med Child Neurol 1994;36:198-215.
29. King GA, Shultz IZ, Steel K, Gilpin M, Cathers T. Self-evaluation and self-concept of adolescents with physical disabilities. Am J Occup Ther 1993;47:132-40.
30. Verhoeven AC, Bibo JC, Boers M, Engel GL, van der Linden S. Cost-effectiveness and cost-utility of combination therapy in early rheumatoid arthritis: randomized comparison of combined step-down prednisolone, methotrexate and sulphasalazine with sulphasalazine alone: COBRA Trial Group, Combinatietherapie Bij Reumatoide Artritis. Br J Rheumatol 1998;37:1102-9.
31. Blumenschein K, Johannesson M. Relationship between quality of life instruments, health state utilities, and willingness to pay in patients with asthma. Ann Allergy Asthma Immunol 1998;80:189-94.
32. Guyatt GH, King DR, Feeny DH, Stubbing D, Goldstein RS. Generic and specific measurement of health-related quality of life in a clinical trial of respiratory rehabilitation. J Clin Epidemiol 1999;52:187-92.
33. Jenney ME, Campbell S. Measuring quality of life. Arch Dis Child 1997;77:347-50.
34. Ladd RE, Forman EN. Adolescent decision-making: giving weight to age-specific values. Theor Med 1995;16:333-45.
35. Eiser C. Children's quality of life measures. Arch Dis Child 1997;77:350-4.
36. Brown RT. Risk factors for substance abuse in adolescents. Pediatr Clin North Am 2002;49:247-55.
37. Britto MT, Garrett JM, Dugliss MA, Daeschner CW, Jr, Johnson CA, Leigh MW, et al. Risky behavior in teens with cystic fibrosis or sickle cell disease: a multicenter study. Pediatrics 1998;101:250-6.
38. Nasr SZ. Cystic fibrosis in adolescents and young adults. Adolesc Med 2000;11:589-603.
39. Tsevat J, Cook EF, Green ML, Matchar DB, Dawson NV, Broste SK, et al. Health values of the seriously ill: SUPPORT Investigators. Ann Intern Med 1995;122:514-20.
40. Tsevat J, Keck PE, Hornung RW, McElroy SL. Health values of patients with bipolar disorder. Qual Life Res 2000;9:579-86.
41. Lenert L, Kaplan RM. Validity and interpretation of preference-based measures of health-related quality of life. Med Care 2000;38(9 Suppl):II138-50.
42. Sawyer SM. Reproductive health in young people with cystic fibrosis. Curt Opin Pediatr 1995;7:376-80.
43. Oermann CM. Fertility in patients with cystic fibrosis. Chest 2000;118:893-4.
44. Nolan T, Desmond K, Herlich R, Hardy S. Knowledge of cystic fibrosis in patients and their parents. Pediatrics 1986;77:229-35.
45. Hames A, Beesley J, Nelson R. Cystic fibrosis: what do patients know, and what else would they like to know? Respir Med 1991;85:389-92.
46. Cystic Fibrosis Foundation. Clinical practice guidelines for cystic fibrosis. Bethesda, Md: Cystic Fibrosis Foundation; 1997.
47. Laine C, Davidoff F. Patient-centered medicine: a professional evolution. JAMA 1996;275:152-6.
48. Saigal S, Stoskopf BL, Feeny D, Furlong W, Burrows E, Rosenbaum PL, et al. Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA 1999;281:1991-7.
49. Hays RD, Vickrey BG, Hermann BP, Perrine K, Cramer J, Meador K, et al. Agreement between self reports and proxy reports of quality of life in epilepsy patients. Qual Life Res 1995;4:159-68.
50. Guyatt GH, Juniper EF, Griffith LE, Feeny DH, Ferrie PJ. Children and adult perceptions of childhood asthma. Pediatrics 1997;99:165-8.
51. Tsevat J, Dawson NV, Wu AW, Lynn J, Soukup JR, Cook EF, et al. Health values of hospitalized patients 80 years or older: HELP Investigators, Hospitalized Elderly Longitudinal Project. JAMA 1998;279:371-5.