Disease Management & Health Outcomes

, Volume 11, Issue 11, pp 709–721

Health Outcomes Assessment in Cancer

Current Measurement Strategies and Recommendations for Improvement
Review Article


Measuring the outcomes of cancer care has become increasingly important both in clinical practice and in health policy. Responsiveness to patient-centered needs, preferences, and outcomes is one of the hallmarks of quality healthcare.

Health-related quality of life (HR-QOL) measures can be considered within a framework based upon: (i) whether the measure is a generic instrument applicable across a wide range of health conditions, or whether it is specific to cancer or a specific cancer site; (ii) whether it measures a single domain of health or multiple domains; and (iii) whether or not the measure is preference based. Judicious selection of a set of instruments from within different areas of this framework can provide a detailed description of relevant aspects of a patient’s health for a wide variety of research and clinical needs.

Current health outcomes research is focused not only on the development of improved measures of health, but also on how to expand the use of these measures from research settings into clinical practice and health policy in ways to improve the process and outcomes of cancer care. Shared decision-making tools incorporating HR-QOL data can assist patients in clarifying decision alternatives for difficult cancer treatment decisions. Observational studies of HR-QOL of cancer patients can help patients better understand potential outcomes of their choices. HR-QOL measures are being used in quality of care initiatives.

Cancer care is composed of a spectrum of services, ranging from prevention and early detection, through to diagnosis and treatment, as well as end-of-life care. As the importance of the patient’s perspective has become more clearly recognized, health outcomes measures have become more widely used and can contribute to improved care across the spectrum of cancer services. While further research needs to focus on developing better measures of health, it is equally imperative that future research focus on methods to incorporate health outcomes measurement into practice in ways to improve clinical practice, health policy, and ultimately to improve the outcomes of care of patients with cancer.


  1. 1.
    Fisher B, Anderson S, Bryant J, et al. Twenty-year follow-up of a randomized trial comparing total mastectomy, lumpectomy, and lumpectomy plus irradiation for the treatment of invasive breast cancer. N Engl J Med 2002; 347(16): 1233–41PubMedCrossRefGoogle Scholar
  2. 2.
    Veronesi U, Cascinelli N, Mariani L, et al. Twenty-year follow-up of a randomized study comparing breast-conserving surgery with radical mastectomy for early breast cancer. N Engl J Med 2002; 347(16): 1227–32PubMedCrossRefGoogle Scholar
  3. 3.
    Holmberg L, Bill-Axelson A, Helgesen F, et al. A randomized trial comparing radical prostatectomy with watchful waiting in early prostate cancer. N Engl J Med 2002; 347(11): 781–9PubMedCrossRefGoogle Scholar
  4. 4.
    Steineck G, Helgesen F, Adolfsson J, et al. Quality of life after radical prostatectomy or watchful waiting. N Engl J Med 2002; 347(11): 790–6PubMedCrossRefGoogle Scholar
  5. 5.
    Potosky AL, Harlan LC, Stanford JL, et al. Prostate cancer practice patterns and quality of life: the Prostate Cancer Outcomes Study. J Natl Cancer Inst 1999; 91(20): 1719–24PubMedCrossRefGoogle Scholar
  6. 6.
    Lu-Yao G, Albertsen PC, Stanford JL, et al. Natural experiment examining impact of aggressive screening and treatment on prostate cancer mortality in two fixed cohorts from Seattle area and Connecticut. BMJ 2002; 325(7367): 740PubMedCrossRefGoogle Scholar
  7. 7.
    Mandelblatt JS, Eisenberg JM. Historical and methodological perspectives on cancer outcomes research. Oncology (Huntingt) 1995; 9(11 Suppl.): 23–32Google Scholar
  8. 8.
    Goodyear MDE, Fraumeni MA. Incorporating quality of life assessment into clinical cancer trials. In: Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials. 2nd ed. Philadelphia: Lippincott-Raven, 1996: 1003–14Google Scholar
  9. 9.
    Moinpour CM, Feigl P, Metch B, et al. Quality of life end points in cancer clinical trials: review and recommendations. J Natl Cancer Inst 1989; 81(7): 485–95PubMedCrossRefGoogle Scholar
  10. 10.
    Ganz PA, Moinpour CM, Cella DF, et al. Quality-of-life assessment in cancer clinical trials: a status report. J Natl Cancer Inst 1992; 84(13): 994–5PubMedCrossRefGoogle Scholar
  11. 11.
    Kiebert G, Wait S, Bernhard J, et al. Practice and policy of measuring quality of life and health economics in cancer clinical trials: a survey among co-operative trial groups. Qual Life Res 2000; 9(10): 1073–80PubMedCrossRefGoogle Scholar
  12. 12.
    Clancy CM, Eisenberg JM. Outcomes research: measuring the end results of health care. Science 1998; 282(5387): 245–6PubMedCrossRefGoogle Scholar
  13. 13.
    Clancy CM, Lawrence W. Is outcomes research on cancer ready for prime time? Med Care 2002; 40(6 Suppl.): III92–100PubMedGoogle Scholar
  14. 14.
    Lee SJ, Earle CC, Weeks JC. Outcomes research in oncology: history, conceptual framework, and trends in the literature. J Natl Cancer Inst 2000; 92(3): 195–204PubMedCrossRefGoogle Scholar
  15. 15.
    Lohr KN, Schroeder SA. A strategy for quality assurance in Medicare. N Engl J Med 1990; 322(10): 707–12PubMedCrossRefGoogle Scholar
  16. 16.
    Institute of Medicine. Crossing the quality chasm: a new health care system for the 21st century. Washington, DC: National Academy Press, 2001Google Scholar
  17. 17.
    WHO. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19–22 June, 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no.2, p. 100) and entered into force on 7 April, 1948; 1948Google Scholar
  18. 18.
    US Department of Health and Human Services. Healthy People 2010: understanding and improving health. 2nd ed. Washington, DC: US Government Printing Office, 2000Google Scholar
  19. 19.
    Ottawa charter for health promotion. Can J Public Health 1986; 77(6): 425–30Google Scholar
  20. 20.
    Varricchio CG, Sloan JA. The need for and characteristics of randomized, phase III trials to evaluate symptom management in patients with cancer. J Natl Cancer Inst 2002; 94(16): 1184–5PubMedCrossRefGoogle Scholar
  21. 21.
    Ware Jr JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36): I. conceptual framework and item selection. Med Care 1992; 30(6): 473–83PubMedCrossRefGoogle Scholar
  22. 22.
    Singer PA, Tasch ES, Stocking C, et al. Sex or survival: trade-offs between quality and quantity of life. J Clin Oncol 1991; 9(2): 328–34PubMedGoogle Scholar
  23. 23.
    McNeil BJ, Weichselbaum R, Pauker SG. Speech and survival: tradeoffs between quality and quantity of life in laryngeal cancer. N Engl J Med 1981; 305(17): 982–7PubMedCrossRefGoogle Scholar
  24. 24.
    Karnofsky DA, Abelmann WH, Craver LF, et al. The use of the nitrogen mustards in the palliative treatment of carcinoma. Cancer 1948; 1: 634–56CrossRefGoogle Scholar
  25. 25.
    Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life: a conceptual model of patient outcomes. JAMA 1995; 273(1): 59–65PubMedCrossRefGoogle Scholar
  26. 26.
    Kaplan SH, Kravitz RL, Greenfield S. A critique of current uses of health status for the assessment of treatment effectiveness and quality of care. Med Care 2000; 38(9 Suppl.): 11184–91Google Scholar
  27. 27.
    Brady MJ, Peterman AH, Fitchett G, et al. A case for including spirituality in quality of life measurement in oncology. Psychooncology 1999; 8(5): 417–28PubMedCrossRefGoogle Scholar
  28. 28.
    Gold MR, Siegel JE, Russell LB, et al., editors. Cost-effectiveness in health and medicine. New York: Oxford University Press, 1996Google Scholar
  29. 29.
    Ware Jr JE, Kosinski M, Bayliss MS, et al. Comparison of methods for the scoring and statistical analysis of SF-36 health profile and summary measures: summary of results from the Medical Outcomes Study. Med Care 1995; 33(4 Suppl.): AS264–79PubMedGoogle Scholar
  30. 30.
    Ware Jr J, Kosinski M, Keller SD. A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care 1996; 34(3): 220–33PubMedCrossRefGoogle Scholar
  31. 31.
    Bergner M, Bobbitt RA, Pollard WE, et al. The sickness impact profile: validation of a health status measure. Med Care 1976; 14(1): 57–67PubMedCrossRefGoogle Scholar
  32. 32.
    Bergner M, Bobbitt RA, Carter WB, et al. The sickness impact profile: development and final revision of a health status measure. Med Care 1981; 19(8): 787–805PubMedCrossRefGoogle Scholar
  33. 33.
    Hunt SM, McKenna SP, McEwen J, et al. A quantitative approach to perceived health status: a validation study. J Epidemiol Community Health 1980; 34(4): 281–6PubMedCrossRefGoogle Scholar
  34. 34.
    Hunt SM, McKenna SP, McEwen J, et al. The Nottingham Health Profile: subjective health status and medical consultations. Soc Sci Med [A] 1981; 15(3 Pt 1): 221–9CrossRefGoogle Scholar
  35. 35.
    Nelson E, Wasson J, Kirk J, et al. Assessment of function in routine clinical practice: description of the COOP Chart method and preliminary findings. J Chronic Dis 1987; 40 Suppl. 1: 55S–69SPubMedCrossRefGoogle Scholar
  36. 36.
    Nelson EC, Landgraf JM, Hays RD, et al. The functional status of patients: how can it be measured in physicians’ offices? Med Care 1990; 28(12): 1111–26PubMedCrossRefGoogle Scholar
  37. 37.
    Aaronson NK, Ahmedzai S, Bergman B, et al. 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 1993; 85(5): 365–76PubMedCrossRefGoogle Scholar
  38. 38.
    Sprangers MA, Cull A, Bjordal K, et al. The European Organization for Research and Treatment of Cancer. Approach to quality of life assessment: guidelines for developing questionnaire modules: EORTC Study Group on quality of life. Qual Life Res 1993; 2(4): 287–95PubMedCrossRefGoogle Scholar
  39. 39.
    Cella DF, Tulsky DS, Gray G, et al. The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol 1993; 11(3): 570–9PubMedGoogle Scholar
  40. 40.
    Litwin MS, Hays RD, Fink A, et al. The UCLA Prostate Cancer Index: development, reliability, and validity of a health-related quality of life measure. Med Care 1998; 36(7): 1002–12PubMedCrossRefGoogle Scholar
  41. 41.
    Litwin MS, Hays RD, Fink A, et al. Quality-of-life outcomes in men treated for localized prostate cancer. JAMA 1995; 273(2): 129–35PubMedCrossRefGoogle Scholar
  42. 42.
    Lubeck DP, Litwin MS, Henning JM, et al. Measurement of health-related quality of life in men with prostate cancer: the CaPSURE database. Qual Life Res 1997; 6(5): 385–92PubMedCrossRefGoogle Scholar
  43. 43.
    Levine MN, Guyatt GH, Gent M, et al. Quality of life in stage II breast cancer: an instrument for clinical trials. J Clin Oncol 1988; 6(12): 1798–810PubMedGoogle Scholar
  44. 44.
    Furlong WJ, Feeny DH, Torrance GW, et al. The Health Utilities Index (HUI) system for assessing health-related quality of life in clinical studies. Ann Med 2001; 33(5): 375–84PubMedCrossRefGoogle Scholar
  45. 45.
    Kind P. The EuroQoL Instrument: an index of health-related quality of life. In: Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials. 2nd ed. Philadelphia: Lippincott-Raven, 1996: 191–202Google Scholar
  46. 46.
    Kaplan RM, Anderson JP. A general health policy model: update and applications. Health Serv Res 1988; 23(2): 203–35PubMedGoogle Scholar
  47. 47.
    Kaplan RM, Anderson JP, Wu AW, et al. The Quality of Well-being Scale: applications in AIDS, cystic fibrosis, and arthritis. Med Care 1989; 27(3 Suppl.): S27–43PubMedCrossRefGoogle Scholar
  48. 48.
    Brazier J, Roberts J, Deverill M. The estimation of a preference-based measure of health from the SF-36. J Health Econ 2002; 21(2): 271–92PubMedCrossRefGoogle Scholar
  49. 49.
    Rosendahl I, Kiebert GM, Curran D, et al. Quality-adjusted survival (Q-TWiST) analysis of EORTC trial 30853: comparing goserelin acetate and flutamide with bilateral orchiectomy in patients with metastatic prostate cancer. European Organization for Research and Treatment of Cancer. Prostate 1999; 38(2): 100–9PubMedCrossRefGoogle Scholar
  50. 50.
    Weeks JC, O’Leary J, Fairclough D, et al. The Q-tility index: a new tool for assessing health related quality of life and utilities in clinical trials and clinical practice [abstract]. Proc Am Soc Clin Oncol 1994; 13: 436Google Scholar
  51. 51.
    Krahn M, Ritvo P, Irvine J, et al. Construction of the patient-oriented prostate utility scale (PORPUS): a multiattribute health state classification system for prostate cancer. J Clin Epidemiol 2000; 53(9): 920–30PubMedCrossRefGoogle Scholar
  52. 52.
    Roberts RE, Vernon SW. The Center for EpidemiologicStudies Depression Scale: its use in a community sample. Am J Psychiatry 1983; 140(1): 41–6PubMedGoogle Scholar
  53. 53.
    Weissman MM, Sholomskas D, Pottenger M, et al. Assessing depressive symptoms in five psychiatric populations: a validation study. Am J Epidemiol 1977; 106(3): 203–14PubMedGoogle Scholar
  54. 54.
    Sherbourne CD. Social functioning: sexual problems measures. In: Stewart AL, Ware Jr JE, editors. Measuring functioning and well-being: the medical outcomes study approach. Durham (NC): Duke University Press, 1992: 194–204Google Scholar
  55. 55.
    Brook RH, Ware Jr JE, Davies-Avery A, et al. Overview of adult health measures fielded in Rand’s health insurance study. Med Care 1979; 17(7 Suppl.): iii–x, 1–131PubMedGoogle Scholar
  56. 56.
    McHorney CA, Ware Jr JE, Raczek AE. The MOS 36-item short-form health survey (SF-36): II. psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 1993; 31(3): 247–63PubMedCrossRefGoogle Scholar
  57. 57.
    McHorney CA, Ware Jr JE, Lu JF, et al. The MOS 36-item short-form health survey (SF-36): III. tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care 1994; 32(1): 40–66PubMedCrossRefGoogle Scholar
  58. 58.
    Ware Jr JE, Kosinski M. SF-36: physical and mental health summary scales: a manual for users of version 1. 2nd ed. Lincoln (RI): QualityMetric Inc, 2001Google Scholar
  59. 59.
    Broeckel JA, Jacobsen PB, Balducci L, et al. Quality of life after adjuvant chemotherapy for breast cancer. Breast Cancer Res Treat 2000; 62(2): 141–50PubMedCrossRefGoogle Scholar
  60. 60.
    Girotto JA, Schreiber J, Nahabedian MY. Breast reconstruction in the elderly: preserving excellent quality of life. Ann Plast Surg 2003; 50(6): 572–8PubMedCrossRefGoogle Scholar
  61. 61.
    Schapira MM, Lawrence WF, Katz DA, et al. Effect of treatment on quality of life among men with clinically localized prostate cancer. Med Care 2001; 39(3): 243–53PubMedCrossRefGoogle Scholar
  62. 62.
    Davis AM, O’sullivan B, Bell RS, et al. Function and health status outcomes in a randomized trial comparing preoperative and postoperative radiotherapy in extremity soft tissue sarcoma. J Clin Oncol 2002; 20(22): 4472–7PubMedCrossRefGoogle Scholar
  63. 63.
    Baker F, Haffer SC, Denniston M. Health-related quality of life of cancer and noncancer patients in Medicare managed care. Cancer 2003; 97(3): 674–81PubMedCrossRefGoogle Scholar
  64. 64.
    Edman L, Larsen J, Hagglund H, et al. Health-related quality of life, symptom distress and sense of coherence in adult survivors of allogeneic stem-cell transplantation. Eur J Cancer Care (Engl) 2001; 10(2): 124–30CrossRefGoogle Scholar
  65. 65.
    Finizia C, Bergman B. Health-related quality of life in patients with laryngeal cancer: a post-treatment comparison of different modes of communication. Laryngoscope 2001; 111(5): 918–23PubMedCrossRefGoogle Scholar
  66. 66.
    Mansson A, Colleen S, Hermeren G, et al. Which patients will benefit from psychosocial intervention after cystectomy for bladder cancer? Br J Urol 1997; 80(1): 50–7PubMedCrossRefGoogle Scholar
  67. 67.
    Bergman B, Sullivan M, Sorenson S. Quality of life during chemotherapy for small cell lung cancer: II. a longitudinal study of the EORTC core quality of life questionnaire and comparison with the sickness impact profile. Acta Oncol 1992; 31(1): 19–28PubMedCrossRefGoogle Scholar
  68. 68.
    Damiano AM. The sickness impact profile. In: Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials. 2nd ed. Philadelphia: Lippincott-Raven, 1996: 347–54Google Scholar
  69. 69.
    Montazeri A, Hole DJ, Milroy R, et al. Quality of life in lung cancer patients: does socioeconomic status matter? Health Qual Life Outcomes 2003; 1(1): 19PubMedCrossRefGoogle Scholar
  70. 70.
    Montazeri A, Milroy R, Hole D, et al. How quality of life data contribute to our understanding of cancer patients’ experiences? A study of patients with lung cancer. Qual Life Res 2003; 12(2): 157–66PubMedCrossRefGoogle Scholar
  71. 71.
    Montazeri A, Milroy R, Hole D, et al. Quality of life in lung cancer patients: as an important prognostic factor. Lung Cancer 2001; 31(2–3): 233–40PubMedCrossRefGoogle Scholar
  72. 72.
    Fraser SC, Dobbs HJ, Ebbs SR, et al. Combination or mild single agent chemotherapy for advanced breast cancer? CMF vs epirubicin measuring quality of life. Br J Cancer 1993; 67(2): 402–6PubMedCrossRefGoogle Scholar
  73. 73.
    Fraser SC, Ramirez AJ, Ebbs SR, et al. A daily diary for quality of life measurement in advanced breast cancer trials. Br J Cancer 1993; 67(2): 341–6PubMedCrossRefGoogle Scholar
  74. 74.
    Pietrabissa A, Vistoli F, Carobbi A, et al. Thoracoscopic splanchnicectomy for pain relief in unresectable pancreatic cancer. Arch Surg 2000; 135(3): 332–5PubMedCrossRefGoogle Scholar
  75. 75.
    Brazier JE, Harper R, Jones NM, et al. Validating the SF-36 health survey questionnaire: new outcome measure for primary care. BMJ 1992; 305(6846): 160–4PubMedCrossRefGoogle Scholar
  76. 76.
    Detmar SB, Muller MJ, Schornagel JH, et al. Role of health-related quality of life in palliative chemotherapy treatment decisions. J Clin Oncol 2002; 20(4): 1056–62PubMedCrossRefGoogle Scholar
  77. 77.
    Detmar SB, Muller MJ, Schornagel JH, et al. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA 2002; 288(23): 3027–34PubMedCrossRefGoogle Scholar
  78. 78.
    Sneeuw KC, Aaronson NK, Sprangers MA, et al. Evaluating the quality of life of cancer patients: assessments by patients, significant others, physicians and nurses. Br J Cancer 1999; 81(1): 87–94PubMedCrossRefGoogle Scholar
  79. 79.
    Van Bokhorst-de Van der Schuer MA, Langendoen SI, Vondeling H, et al. Perioperative enteral nutrition and quality of life of severely malnourished head and neck cancer patients: a randomized clinical trial. Clin Nutr 2000; 19(6): 437–44PubMedCrossRefGoogle Scholar
  80. 80.
    Wasson JH, Kairys SW, Nelson EC, et al. A short survey for assessing health and social problems of adolescents. Dartmouth Primary Care Cooperative Information Project (The COOP). J Fam Pract 1994; 38(5): 489–94PubMedGoogle Scholar
  81. 81.
    Garratt A, Schmidt L, Mackintosh A, et al. Quality of life measurement: bibliographic study of patient assessed health outcome measures. BMJ 2002; 324(7351): 1417PubMedCrossRefGoogle Scholar
  82. 82.
    Brady MJ, Cella DF, Mo F, et al. Reliability and validity of the functional assessment of cancer therapy-breast quality-of-life instrument. J Clin Oncol 1997; 15(3): 974–86PubMedGoogle Scholar
  83. 83.
    Sprangers MA, Groenvold M, Arraras JI, et al. The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: first results from a three-country field study. J Clin Oncol 1996; 14(10): 2756–68PubMedGoogle Scholar
  84. 84.
    Montazeri A, Milroy R, Gillis CR, et al. Quality of life: perception of lung cancer patients. Eur J Cancer 1996; 32A(13): 2284–9PubMedCrossRefGoogle Scholar
  85. 85.
    Cella DF, Bonomi AE, Lloyd SR, et al. Reliability and validity of the Functional Assessment of Cancer Therapy-Lung (FACT-L) quality of life instrument. Lung Cancer 1995; 12(3): 199–220PubMedCrossRefGoogle Scholar
  86. 86.
    Borghede G, Sullivan M. Measurement of quality of life in localized prostatic cancer patients treated with radiotherapy: development of a prostate cancer-specific module supplementing the EORTC QLQ-C30. Qual Life Res 1996; 5(2): 212–22PubMedCrossRefGoogle Scholar
  87. 87.
    Esper P, Mo F, Chodak G, et al. Measuring quality of life in men with prostate cancer using the functional assessment of cancer therapy-prostate instrument. Urology 1997; 50(6): 920–8PubMedCrossRefGoogle Scholar
  88. 88.
    Fisher B, Costantino JP, Wickerham DL, et al. Tamoxifen for prevention of breast cancer: report of the National Surgical Adjuvant Breast and Bowel Project P-1 Study. J Natl Cancer Inst 1998; 90(18): 1371–88PubMedCrossRefGoogle Scholar
  89. 89.
    Torrance GW. Utility approach to measuring health-related quality of life. J Chronic Dis 1987; 40(6): 593–603PubMedCrossRefGoogle Scholar
  90. 90.
    Patrick DL, Erickson P. Health status and health policy. New York: Oxford University Press, 1993Google Scholar
  91. 91.
    Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med 1993; 118(8): 622–9PubMedGoogle Scholar
  92. 92.
    Field MJ, Gold MR, editors. Summarizing population health: directions for the development and application of population metrics. Washington, DC: National Academy Press, 1998Google Scholar
  93. 93.
    Earle CC, Chapman RH, Baker CS, et al. Systematic overview of cost-utility assessments in oncology. J Clin Oncol 2000; 18(18): 3302–17PubMedGoogle Scholar
  94. 94.
    Froberg DG, Kane RL. Methodology for measuring health-state preferences: II. Scaling methods. J Clin Epidemiol 1989; 42(5): 459–71PubMedCrossRefGoogle Scholar
  95. 95.
    von Neumann J, Morgenstern O. Theory of games and economic behavior. Princeton (NJ): Princeton University Press, 1947Google Scholar
  96. 96.
    Torrance GW, Feeny D, Furlong W. Visual analog scales: do they have a role in the measurement of preferences for health states? Med Decis Making 2001; 21(4): 329–34PubMedGoogle Scholar
  97. 97.
    Bell CM, Chapman RH, Stone PW, et al. An off-the-shelf help list: a comprehensive catalog of preference scores from published cost-utility analyses. Med Decis Making 2001; 21(4): 288–94PubMedGoogle Scholar
  98. 98.
    Dolan P. Modeling valuations for EuroQol health states. Med Care 1997; 35(11): 1095–108PubMedCrossRefGoogle Scholar
  99. 99.
    Bradlyn AS, Harris CV, Warner JE, et al. An investigation of the validity of the quality of Weil-Being Scale with pediatric oncology patients. Health Psychol 1993; 12(3): 246–50PubMedCrossRefGoogle Scholar
  100. 100.
    Sung L, Greenberg ML, Doyle JJ, et al. Construct validation of the Health Utilities Index and the Child Health Questionnaire in children undergoing cancer chemotherapy. Br J Cancer 2003; 88(8): 1185–90PubMedCrossRefGoogle Scholar
  101. 101.
    Dlugos D, Ravina B, Jacobstein C, et al. Applicability of the Health Utilities Index to a population of childhood survivors of central nervous system. Eur J Cancer 2000; 36(11): 1459–61PubMedCrossRefGoogle Scholar
  102. 102.
    Nixon Speechley K, Maunsell E, Desmeules M, et al. Mutual concurrent validity of the child health questionnaire and the health utilities index: an exploratory analysis using survivors of childhood cancer. Int J Cancer Suppl 1999; 12: 95–105PubMedCrossRefGoogle Scholar
  103. 103.
    Glaser AW, Furlong W, Walker DA, et al. Applicability of the Health Utilities Index to a population of childhood survivors of central nervous system tumours in the UK. Eur J Cancer 1999; 35(2): 256–61PubMedCrossRefGoogle Scholar
  104. 104.
    Mulhern RK. Correlation of the Health Utilities Index Mark 2 cognition scale and neuropsychological functioning among survivors of childhood medulloblastoma. Int J Cancer Suppl 1999; 12: 91–4PubMedCrossRefGoogle Scholar
  105. 105.
    Glaser AW, Abdul Rashid NF, Chin Lyn U, et al. School behaviour and health status after central nervous system tumours in childhood. Br J Cancer 1997; 76(5): 643–50PubMedCrossRefGoogle Scholar
  106. 106.
    Barr RD, Simpson T, Whitton A, et al. Health-related quality of life in survivors of tumours of the central nervous system in childhood: a preference-based approach to measurement in a cross-sectional study. Eur J Cancer 1999; 35(2): 248–55PubMedCrossRefGoogle Scholar
  107. 107.
    Van Schaik CS, Barr RD, Depauw S, et al. Assessment of health status and health-related quality of life in survivors of Hodgkin’s disease in childhood. Int J Cancer Suppl 1999; 12: 32–8PubMedGoogle Scholar
  108. 108.
    Chapman GB, Elstein AS, Kuzel TM, et al. A multi-attribute model of prostate cancer patient’s preferences for health states. Qual Life Res 1999; 8(3): 171–80PubMedCrossRefGoogle Scholar
  109. 109.
    Fitzpatrick R, Davey C, Buxton MJ, et al. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess 1998; 2(14): i–iv, 1–74PubMedGoogle Scholar
  110. 110.
    Hays RD, Morales LS, Reise SP. Item response theory and health outcomes measurement in the 21st century. Med Care 2000; 38(9 Suppl.): 1128–42Google Scholar
  111. 111.
    Hambleton RK. Emergence of item response modeling in instrument development and data analysis. Med Care 2000; 38(9 Suppl.): II60–5PubMedGoogle Scholar
  112. 112.
    McHorney CA, Cohen AS. Equating health status measures with item response theory: illustrations with functional status items. Med Care 2000; 38(9 Suppl.): 1143–59Google Scholar
  113. 113.
    Cella D, Chang CH. A discussion of item response theory and its applications in health status assessment. Med Care 2000; 38(9 Suppl.): 1166–72Google Scholar
  114. 114.
    Revicki DA, Cella DF. Health status assessment for the twenty-first century: item response theory, item banking and computer adaptive testing. Qual Life Res 1997; 6(6): 595–600PubMedCrossRefGoogle Scholar
  115. 115.
    Raczek AE, Ware JE, Bjorner JB, et al. Comparison of Rasch and summated rating scales constructed from SF-36 physical functioning items in seven countries: results from the IQOLA Project. International Quality of Life Assessment. J Clin Epidemiol 1998; 51(11): 1203–14PubMedCrossRefGoogle Scholar
  116. 116.
    Sadana R. Definition and measurement of reproductive health. Bull World Health Organ 2002; 80(5): 407–9PubMedGoogle Scholar
  117. 117.
    Stryer D, Tunis S, Hubbard H, et al. The outcomes of outcomes and effectiveness research: impacts and lessons from the first decade. Health Serv Res 2000; 35(5 Pt 1): 977–93PubMedGoogle Scholar
  118. 118.
    National Breast Cancer Coalition. Guide to quality breast cancer care. Washington, DC: National Breast Cancer Coalition, 2002Google Scholar
  119. 119.
    Whelan TM, O’Brien MA, Villasis-Keever M, et al. Impact of cancer-related decision aids. Evidence report/technology assessment number 46. Rockville (MD): Agency for Healthcare Research and Quality, 2002Google Scholar
  120. 120.
    O’Connor AM, Fiset V, DeGrasse C, et al. Decision aids for patients considering options affecting cancer outcomes: evidence of efficacy and policy implications. J Natl Cancer Inst Monogr 1999; 25: 67–80PubMedCrossRefGoogle Scholar
  121. 121.
    O’Connor AM, Rostom A, Fiset V, et al. Decision aids for patients facing health treatment or screening decisions: systematic review. BMJ 1999; 319(7212): 731–4PubMedCrossRefGoogle Scholar
  122. 122.
    Day R, Ganz PA, Costantino JP, et al. Health-related quality of life and tamoxifen in breast cancer prevention: a report from the National Surgical Adjuvant Breast and Bowel Project P-1 Study. J Clin Oncol 1999; 17(9): 2659–69PubMedGoogle Scholar
  123. 123.
    Potosky AL, Legier J, Albertsen PC, et al. Health outcomes after prostatectomy or radiotherapy for prostate cancer: results from the Prostate Cancer Outcomes Study. J Natl Cancer Inst 2000; 92(19): 1582–92PubMedCrossRefGoogle Scholar
  124. 124.
    Potosky AL, Reeve BB, Clegg LX, et al. Quality of life following localized prostate cancer treated initially with androgen deprivation therapy or no therapy. J Natl Cancer Inst 2002; 94(6): 430–7PubMedCrossRefGoogle Scholar
  125. 125.
    Harlan LC, Potosky A, Gilliland FD, et al. Factors associated with initial therapy for clinically localized prostate cancer: prostate cancer outcomes study. J Natl Cancer Inst 2001; 93(24): 1864–71PubMedCrossRefGoogle Scholar
  126. 126.
    Joseph H. Kanter Family Foundation. The National Health Database 2002 [online]. Available from URL: http://www.healthlegacy.org [Accessed 2003 Oct 3]
  127. 127.
    Carlson LE, Speca M, Hagen N, et al. Computerized quality-of-life screening in a cancer pain clinic. J Palliat Care 2001; 17(1): 46–52PubMedGoogle Scholar
  128. 128.
    Taenzer P, Bultz BD, Carlson LE, et al. Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients. Psychooncology 2000; 9(3): 203–13PubMedCrossRefGoogle Scholar
  129. 129.
    Molenaar S, Sprangers MA, Rutgers EJ, et al. Decision support for patients with early-stage breast cancer: effects of an interactive breast cancer CDROM on treatment decision, satisfaction, and quality of life. J Clin Oncol 2001; 19(6): 1676–87PubMedGoogle Scholar
  130. 130.
    Street Jr RL, Voigt B. Patient participation in deciding breast cancer treatment and subsequent quality of life. Med Decis Making 1997; 17(3): 298–306PubMedCrossRefGoogle Scholar
  131. 131.
    Bierman AS, Lawrence WF, Haffer SC, et al. Functional health outcomes as a measure of health care quality for Medicare Beneficiaries. Health Serv Res 2001; 36(6 Pt II): 90–109PubMedGoogle Scholar
  132. 132.
    Cooper JK, Kohlmann T, Michael JA, et al. Health outcomes: new quality measure for Medicare. Int J Qual Health Care 2001; 13(1): 9–16PubMedCrossRefGoogle Scholar
  133. 133.
    Lipscomb J, Snyder CF. The outcomes of cancer outcomes research: focusing on the National Cancer Institute’s quality-of-care initiative. Med Care 2002; 40(6 Suppl.): 1113–10Google Scholar

Copyright information

© Adis Data Information BV 2003

Authors and Affiliations

  1. 1.Center for Outcomes and Effectiveness ResearchAgency for Healthcare Research and QualityRockvilleUSA

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