Integrating Patient-Reported Outcomes into Research and Clinical Practice

Kendig and Chernick's Disorders of the Respiratory Tract in Children

Volumn , Issue , 2012, Pages 251-260

  Quittner, Alexandra L ^a   Alpern, Adrianne N ^b   Kimberg, Cara I ^c  

^a UNIVERSITY OF MIAMI   (United States)

^b Department of Biology   (United States)

^c ST JUDE CHILDREN S RESEARCH HOSPITAL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84869129924     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1016/B978-1-4377-1984-0.00014-0     Document Type: Chapter

References (92)

1. Institute of Medicine (2001) Crossing the Quality Chasm: A New Health System for the 21st Century vol. 6 Washington, DC: National Academy Press
2. K. Davis, S.C. Schoenbaum and A. Audet (2005) A 2020 Vision of Patient-Centered Primary Care. J Gen Intern Med. 20 953-957.
3. Food and Drug Administration (December 2009) Guidance for Industry, Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims.
4. A.L. Quittner, A. Modi and I. Cruz (2008) Systematic review of health-related quality of life measures for children with respiratory conditions. Paediatr Respir Rev. 9 220-232.
5. A.L. Quittner, M.A. Davis and A.C. Modi (2003) Health-related quality of life in pediatric populations. M. Roberts,(Eds) Handbook of Pediatric Psychology New York: Guildford Publications 696-709.
6. D.A. Revivki, P.A. Erickson and J.A. Sloan (2007) Interpreting and reporting results based on patient reported outcomes. Value Health 10 S116-S124.
7. S.B. Detmar, M.J. Muller and J.H. Schomagel (2002) Health-related quality of life assessments and patient-physician communication: a randomized controlled trial. JAMA 288 3027-3034.
8. S. Feeny (2005) Preference-based measures: utility and quality-adjusted life years. P. Fayers, R. Hays,(Eds) Assessing Quality of life in Clinical Trials Oxford: Oxford University Press 405-430.
9. J.F. Scoggins and D.L. Patrick (2009) The use of patient-reported outcomes instruments in registered clinical trials: evidence from ClinicalTrials.gov. Contemp Clin Trials 30 289-292.
10. A.L. Quittner, A. Buu and M.A. Messer (2005) Development and validation of the cystic fibrosis questionnaire (CFQ) in the United States: A health-related quality of life measure for cystic fibrosis. Chest 128 2347-2354.
11. G.Z. Retsch-Bogar, A.L. Quittner and R.L. Gibson (2009) Efficacy and safety of inhaled aztreonam lysine for airway pseudomonas in cystic fibrosis. Chest 135 1223-1232.
12. K.W. Wyrwich, M. Bullinger and N. Aaronson The Clinical Significance Consensus Meeting Group (2005) Estimating clinically significant difference in quality of life outcomes. Qual Life Res 14 285-295.
13. C.H. Goss and A.L. Quittner (2007) Patient-reported outcomes in cystic fibrosis. Proc Am Thorac Soc. 4 378-386.
14. A.L. Quittner, A.C. Modi and C. Wainwright (2009) Determination of the minimal clinically important difference (MCID) score for the Cystic Fibrosis Questionnaire - Revised (CFQ - R) Respiratory Symptoms scale in two populations of patients with CF and chronic Pseudomonas aeruginosa airway infection. Chest 135 1610-1618.
15. World Health Organization (1976) Preamble to the constitution of the World Health Organization. Basic Documents 26th ed Geneva, Switzerland, pp 1
16. L. Chiang, L. Tzeng and L. Fu (2006) Testing a questionnaire to measure asthma-related quality of life among children. J Nurs Scholarsh. 38 383-386.
17. R.D. Hays (2005) Generic versus disease-targeted instruments. P. Fayers, R. Hays,(Eds) Assessing Quality of Life in Clinical Trials Oxford: Oxford University Press 3-8.
18. J.W. Varni, M. Seid and C.A. Rode (1999) The PedsQL: Measurement model for the pediatric quality of life inventory. Med Care 37 126-139.
19. J.M. Landgraf (2005) Practical considerations in measurement of HRQOL in child/adolescent clinical trials. P. Fayers, R. Hays,(Eds) Assessing Quality of life in Clinical Trials Oxford: Oxford University Press 339-367.
20. J.M. Landgraf and L. Abetz (1996) Measuring health outcomes in pediatric populations, issues in psychometrics and application. B. Spilker,(Eds) Quality of Life and Pharmacoeconomics in Clinical Trials Philadelphia: Lippincott-Raven 793-802.
21. L.C. Varkula, R.M. Resler and P.A. Schulze (2010) Pre-school children's understanding of cancer: the impact of parental teaching and life experience. J Child Health Care 14 24-34.
22. J. Williams and L. Binnie (2002) Children's Concepts of Illness: an Intervention to Improve Knowledge. Br J Health Psychol. 7 129-147.
23. D.J. Burbach and L. Peterson (1986) Children's concepts of physical illness: A review and critique of the cognitive developmental literature. Health Psychol. 5 307-325.
24. A.C. Modi and A.L. Quittner (2003) Validation of a disease-specific measure of health-related quality of life for children with cystic fibrosis. J Pediatr Psychol. 28 535-545.
25. G. Rebok, A. Riley and C. Forrest (2001) Elementary school-aged children's reports of their health: A cognitive interviewing study. Qual Life Res. 10 59-70.
26. S. Saigal, D. Feeny and W. Furlong (2005) Do teens differ from parents in rating health-related quality of life? A study of premature and control teen/parent dyads. Pediatr Res. 37 271A.
27. A.L. Stewart, R.D. Hays and J.E. Ware (1992) Methods of constructing health measures. A.L. Stewart, J. Ware, Jr. JE,(Eds) Measuring Functioning and Well-Being: The Medical Outcomes Study Approach Durham: Duke University Press 67-85.
28. J.L. Wallander, M. Schmitt and H.M. Koot (2001) Quality of life measurement in children and adolescents. Issues, instruments, and applications. J Clin Psychol. 57 571-585.
29. M.J. Christie, D. French and A. Sowden (1993) Development of child-centered disease-specific questionnaires for living with asthma. Psychosom Med. 55 541-548.
30. E.F. Juniper (1997) Quality of life in adults and children with asthma and rhinitis. Allergy 52 971-977.
31. Siegal M, Patty J, Eiser C. A re-examination of children's conceptions of contagion. Psychol Health. 40(S1):159–165.
32. C. Eiser, I. Cotter and P. Oades (1999) Health-related quality-of-life measures for children. Int J Cancer Suppl. 12 87-90.
33. J.P. Valla, L. Bergeron and N. Smolla (2000) The Dominic-R: a pictorial interview for 6- to 11-year-old children. J Am Acad Child Adolesc Psychiatry 39 85-93.
34. E. McColl and P. Fayers (2005) Context effects and proxy assessments. P. Fayers, R. Hays,(Eds) Assessing Quality of Life in Clinical Trials Oxford: Oxford University Press 131-146.
35. T.M. Palermo, A.C. Long and A.S. Lewandowski (2008) Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology. J Pediatr Psychol. 33 983-996.
36. C. Eiser and M. Jenney (2007) Measuring quality of life. Arch Dis Child 92 348-350.
37. GHW. Verrips, AGC. Vogels and A.L. den Ouden (2000) Measuring health-related quality of life in adolescents: agreement between raters and between methods of administration. Child Care Health Dev. 217 869-876.
38. T. Havermans, M. Vreys and M. Proesmans (2006) Assessment of agreement between parents and children on health-related quality of life in children with cystic fibrosis. Child Care Health Dev. 31 1-7.
39. M.T. Britto, U.R. Kotagal and T. Chenier (2004) Differences between adolescents' and parents' reports of health-related quality of life in cystic fibrosis. Pediatr Pulmonol. 37 165-171.
40. P.B. Jacobsen, K. Davis and D. Cella (2002) Assessing quality of life in research and clinical practice. Oncology-New York 16 133-139.
41. J. Greenhalgh (2009) The applications of PROs in clinical practice: what are they, do they work, and why? Qual Life Res. 18 115-123.
42. G. Velikova, A. Keding and C. Harley (2010) Patients report improvements in continuity of care when quality of life assessments are used routinely in oncology practice: Secondary outcomes of a randomised controlled trial. Eur J Cancer 46 2381-2388.
43. N.K. Aaronson, S. Ahmedzai and B. Bergman (1993) The European organization for research and treatment of cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 85 365-376.
44. M.R. Stockler, D. Osoba and P. Goodwin (1998) Responsiveness to change in health-related quality of life in a randomized clinical trial: a comparison of the Prostate Cancer Specific Quality of Life Instrument (PROSQOLI) with analogous scales from the EORTC QLQ-C30 and a trial specific module. J Clin Epidemiol. 51 137-145.
45. K.B. Haskard Zolnierek and M.R. Dimatteo (2009) Physician communication and patient adherence to treatment: A meta-analysis. Med Care 47 826-834.
46. J.M. Valderas, A. Kotzeva and M. Espallargues (2008) The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature. Qual Life Res. 17 179-193.
47. A.C. Modi and A. Quittner (2006) Barriers to Treatment Adherence for Children with Cystic Fibrosis and Asthma: What gets in the way? J Pediatr Psychol. 31 846-858.
48. A.L. Quittner, A.C. Modi and K. Lemanek (2008) Evidence-based assessment of adherence to medical treatments in pediatric psychology. J Pediatr Psychol. 33 916-936.
49. B.A. Smith, A.C. Modi and A.L. Quittner (2010) Depressive symptoms in children with cystic fibrosis and parents and its effects on adherence to airway clearance. Pediatr Pulmonol. 45 756-763.
50. E.J. Burker, J. Sedway and S. Carone (2004) Psychological and educational factors: Better predictors of work status than FEV1 in adults with cystic fibrosis. Pediatr Pulmonol. 38 413-418.
51. L.E. Kazis, L.F. Callahan and R.F. Meenan (1990) Health status reports in the care of patients with rheumatoid arthritis. J Clin Epidemiol. 43 1243-1253.
52. A.K. Wagner, B.L. Ehrenberg and T.A. Tran (1997) Patient-based health status measurement in clinical practice: A study of its impact on epilepsy patients' care. Qual Life Res. 6 329-341.
53. J.M. Valderas, J. Alonso and L. Prieto (2004) Content-based interpretation aids for health-related quality of life measures in clinical practice. An example for the visual function index (VF-14). Qual Life Res. 13 35-44.
54. P. Rebollo, J.M. Valderas and F. Ortega (2005) Progress in Spain of the described barriers to the use of perceived health status measures in the clinical practice. Med Clín (Barc). 125 703-705.
55. M.J. Santana, D. Feeny and J.A. Johnson (2010) Assessing the use of health-related quality of life measures in the routine clinical care of lung-transplant patients. Qual Life Res. 19 371-379.
56. A. Rogausch, J. Sigle and A. Seibert (2009) Feasibility and acceptance of electronic quality of life assessment in general practice: an implementation study. Health Qual Life Outcomes 7 11.
57. S.C. Mishoe, R.R. Baker and S. Poole (1998) Development of an instrument to assess stress levels and quality of life in children with asthma. J Asthma 35 553-563.
58. C. Rutishauser, S.M. Sawyer and L. Bond (2001) Development and validation of the Adolescent Asthma Quality of Life Questionnaire (AAQOL). Eur Respir J. 17 52-58.
59. M.O. Van De Ven, R.C. Engels and S.M. Sawyer (2007) The role of coping strategies in quality of life of adolescents with asthma. Qual Life Res. 16 625-634.
60. M.J. Christie, D. French and A. Sowden (1993) Development of child-centered disease-specific questionnaires for living with asthma. Psychosom Med. 55 541-548.
61. D.J. French, M.J. Christie and A.J. Sowden (1994) The reproducibility of the Childhood Asthma Questionnaires: Measures of quality of life for children with asthma aged 4–16 years. Qual Life Res. 3 215-224.
62. L. Asmussen, L.M. Olsen and E.N. Grant (1999) Reliability and validity of the children's health survey for asthma. Pediatrics 104 e71.
63. L. Radecki, L.M. Olson and M.P. Frintner (2008) Reliability and Validity of the Children's Health Survey for Asthma—Child Version. Pediatr Asthma Allergy Immunol. 21 89-98.
64. M. Bullinger, S. Schmidt and C. Petersen (2002) Assessing quality of life of children with chronic health conditions and disabilities: a European approach. Int J Rehabil Res. 25 197-206.
65. R.M. Baars, C.I. Atherton and H.I. Koopman The DISABKIDS Group (2005) The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents. Health Qual Life Outcomes 3 70.
66. E.F. Juniper, G.H. Guyatt and D.H. Feeny (1996) Measuring quality of life in children with asthma. Qual Life Res. 5 35-46.
67. H. Mussaffi, R. Omer and D. Prais (2007) Computerised paediatric asthma quality of life questionnaires in routine care. Arch Dis Child 92 678-682.
68. L. Van den Bemt, S. Kooijman and V. Linssen (2010) How does asthma influence the daily life of children? Results of focus group interviews. Health Qual Life Outcomes 8 5.
69. E.F. Juniper, G.H. Guyatt and D.H. Feeny (1996) Measuring quality of life in parents of children of asthma. Qual Life Res. 5 27-34.
70. BCT. Flapper, H.M. Koopman and C. Napel (2006) Psychometric properties of the TACQOL-asthma, a disease-specific measure of health related quality of life for children with asthma and their parents. Chron Respir Dis. 3 65-72.
71. J.W. Varni, T.M. Burwinkle and M.A. Rapoff (2004) The PedsQL in pediatric asthma: reliability and validity of the pediatric quality of life inventory generic core scales and asthma module. J Behav Med. 27 297-318.
72. T.L. Creer, J.K. Wigal and H. Kotses (1993) A life activities questionnaire for childhood asthma. J Asthma 467-473.
73. E.M. le Coq, A.J. Boeke and P.D. Bezemer (2000) Which source should we use to measure quality of life in children with asthma: The children themselves or their parents? Qual Life Res. 9 625-636.
74. D.A. Bukstein, M.M. McGrath and D.A. Buchnew (2000) Evaluation of a short form for measuring health-related quality of life among pediatric asthma patients. J Allergy Clin Immunol. 105 245-251.
75. M.H. Gorelick, D.C. Brousseau and M.W. Stevens (2004) Validity and responsiveness of a brief, asthma-specific quality of life instrument in children with acute asthma. Ann Allergy Asthma Immunol. 92 47-51.
76. L. Gee, J. Abbot and S.P. Conway (2000) Development of a disease specific health related quality of life measure for adults and adolescents with cystic fibrosis. Thorax 55 946-954.
77. Quittner AL, Sawicki GS, McMullen A, et al. Psychometric Evaluationof the Cystic Fibrosis Questionnaire-Revised in a US national sample. Qual Life Res. In press.
78. A.L. Quittner, S. Sweeny and M. Watrous (2000) Translation and linguistic validation of a disease-specific quality of life measure for cystic fibrosis. J Pediatr Psychol. 25 401-414.
79. L. Goldbeck, T.G. Schmitz and G. Henrich (2003) Questions on life satisfaction for adolescents and adults with cystic fibrosis. Chest 123 42-48.
80. E. Hatziagorou, A. Vidalis and M. Quittan (2005) An instrument for assessing quality of life in children and adolescents with Cystic Fibrosis: the DISABKIDS Questionnaire. J Cyst Fibros 4 S108-S118.
81. C. Goss, T. Edwards and J. Lymp (2008) Patient reported respiratory symptoms in cystic fibrosis with the CF Respiratory Symptom Diary. Pediatr Pulmonol. 43 A691.
82. C.H. Goss, T.C. Edwards and B.W. Ramsey (2009) Patient-reported respiratory symptoms in cystic fibrosis. J Cyst Fibros. 8 245-252.
83. D.E. Stull, N.K. Leidy and B. Parasuraman (2009) Optimal recall periods for patient-reported outcomes: challenges and potential solutions. Curr Med Res Opin. 25 929-942.
84. S.H. Donaldson, W.D. Bennett and K.L. Zeman (2006) Mucus clearance and lung function in cystic fibrosis with hypertonic saline. N Engl J Med. 354 241-250.
85. M.R. Elkins, M. Robinson and B.R. Rose (2006) A controlled trial of long-term inhaled hypertonic saline in patients with cystic fibrosis. N Engl J Med. 354 229-240.
86. C.J. Hartnick (2002) Validation of a pediatric voice quality of life instrument: the pediatric voice outcome survey. Arch Otolaryngol Head Neck Surg. 28 919-922.
87. K.L. Mirasola, N. Braun and J.H. Blumin (2007) Self-reported voice-related quality of life in adolescents with paradoxical vocal fold dysfunction. J Voice. 20 1724-1769.
88. M.E. Boseley, M.J. Cunningham and M.S. Volk (2006) Validation of the pediatric voice-related quality of life survey. Arch Otolaryngol Head Neck Surg. 132 717-720.
89. K.B. Zur, S. Cotton and L. Kelchner (2007) Pediatric voice handicap index (pVHI): a new tool for evaluating pediatric dysphonia. Int J Pediatr Otorhinolaryngol. 71 77-82.
90. L.M. de Serres, C. Derkay and S. Astley (2000) Measuring quality of life in children with obstructive sleep disorders. Arch Otolaryngol Head Neck Surg. 126 1423-1429.
91. R.A. Franco, R.M. Rosenfeld and M. Rao (2000) First place—resident clinical science award 1999. Quality of life for children with obstructive sleep apnea. Otolaryngol Head Neck Surg. 123 9-16.
92. S.D. Dell, A. Dupuis and M.R. Knowles (2009) Impaired Health-Related Quality of Life (HRQOL) in children with primary ciliary dyskinesia (PCD). Am J Respir Crit Care Med. 179 A5982.