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Evaluation of quality of life for diverse patient populations

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Summary

Quality of life is used increasingly as a primary and secondary endpoint of clinical investigations of new therapies. Quality of life information may be especially useful for the assessment of cancer treatments, where increases in survival may be accompanied by detrimental side effects. The recognition of the importance of quality of life has led to the recent proliferation of cancer specific quality of life instruments. As more is understood about the heterogeneity of patient populations, however, we must assess how culturally defined factors may impact patient quality of life and its assessment. Quality of life instruments are diverse, ranging from those focusing on objective measures of functionality to those assessing subjective measures of patient preferences for their current health state. These instruments have been developed for use in the general population and for disease-specific populations. Assessment of the appropriateness of potential quality of life instruments in specific clinical settings, in addition to understanding the cultural diversity of the clinical population being studied, will guide the researcher in the choice of an appropriate quality of life instrument for cancer clinical trials.

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References

  1. Aaronson NK, Ahmedzai S, Bullinger M, et al: The EORTC core quality of life questionnaire: interim results of an international field study.In: Osoba D (ed) Effect of Cancer on Quality of Life. CRC Press, Boston, 1991, pp 185–203

    Google Scholar 

  2. 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 85:65–75, 1993

    Google Scholar 

  3. Barofsky I, Sugarbaker PH: Cancer.In: Spilker B (ed) Quality of Life Assessments in Clinical Trials. Raven Press, New York, 1990, pp 419–439

    Google Scholar 

  4. Baum M, Priestman T, West RR, Jones EM: A comparison of subjective responses in a trial comparing endocrine with cytotoxic treatment in advanced carcinoma of the breast.In: Mouridsen HT, Palshof T (eds) Breast Cancer — Experimental and Clinical Aspects. Pergamon, Oxford, 1980, pp 223–226

    Google Scholar 

  5. Bergman B, Sullivan M, Sürenson 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 to the sickness impact profile. Acta Oncologica 31:19–28, 1992

    PubMed  Google Scholar 

  6. Bjordal K, Kaasa S, Ahlner-Elmqvist M, Tollesson E, Bonde A: Development of a head and neck cancer specific module for use with the EORTC core quality of life questionnaire (EORTC QLQ-C30). Qual Life Res 2:72, 1993

    Google Scholar 

  7. Bleehen NM, Fayers PM, Girling DJ, Stephens RJ: Survival, adverse reactions, and quality of life during combination chemotherapy compared with selective palliative treatment for small-cell lung cancer. Resp Med 83:51–58, 1989

    Google Scholar 

  8. Bleehen NM, Girling DJ, Machin D, Stephens RJ: A randomised trial of three or six courses of etoposide cyclophosphamide methotrexate and vincristine or six courses of etoposide and ifosfamide in small lung cancer (SCLC). Br J Cancer 68:1157–1166, 1993

    PubMed  Google Scholar 

  9. Boyd NF, Selby PJ, Sutherland HJ, Hogg S: Measurement of the clinical status of patients with breast cancer: evidence for the validity of self assessment with linear analogue scales. J Clin Epidemiol 41:243–250, 1988

    PubMed  Google Scholar 

  10. Cassileth BR, Soloway MS, Vogelzang NJ, et al: Quality of life and psychosocial status in stage D prostate cancer. Qual Life Res 1:323–330, 1992

    PubMed  Google Scholar 

  11. Cella DF, Orofiamma B, Holland JC, et al: The relationship of psychological distress, extent of disease and performance status in patients with lung cancer. Cancer 60:1661–1667, 1987

    PubMed  Google Scholar 

  12. Coates A, Thomson D, McLeod GR, et al: Prognostic value of quality of life scores in a trial of chemotherapy with or without interferon in patients with metastatic malignant melanoma. Eur J Cancer 29A:1731–1734, 1993

    PubMed  Google Scholar 

  13. da Silva FC, Reis E, Costa T, et al: Quality of life in patients with prostatic cancer. Cancer 71:1138–1142, 1993

    PubMed  Google Scholar 

  14. de Haes JCJM, van Knippenberg FCE, Neijt JP: Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam symptom checklist. Br J Cancer 62:1034–1038, 1990

    PubMed  Google Scholar 

  15. de Haes JCJM, van Knippenberg FCE: The quality of life of cancer patients: a review of the literature. Soc Sci Med 20:809–817, 1985

    PubMed  Google Scholar 

  16. Denis LJ, Carnelro de Moura JL, Bono A, et al: Goserelin acetate and flutamide versus bilateral orchiectomy: A phase III EORTC trial. Urology 42: 119–129, 1993

    PubMed  Google Scholar 

  17. Fayers PM, Bleehen NM, Girling DJ, Stephens RJ: Assessment of quality of life in small-cell lung cancer using a daily diary card developed by the medical research council lung cancer working party. Br J Cancer 64:299–306, 1991

    PubMed  Google Scholar 

  18. Feeny DH, Leiper A, Barr RD, et al: The comprehensive assessment of health status in survivors of childhood cancer: Application to high-risk acute lymphoblastic leukaemia. Br J Cancer 67:1047–1052, 1993

    PubMed  Google Scholar 

  19. Feeny, D, Furlong W, Barr RD, Torrance GW, Rosenbaum P, Weitzman S: A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol 10:923–928, 1992

    PubMed  Google Scholar 

  20. Finkelstein DM, Cassileth BR, Banomi PD, Ruckdeschel JC, Ezdinli EZ, Wolter JM: A pilot study of the functional living index — cancer (FLIC) scale for the assessment of quality of life for metastatic lung cancer patients. Am J Clin Oncol 11:630–633, 1988

    PubMed  Google Scholar 

  21. Fraser SCA, Ramirez AJ, Ebbs SR, et al: A daily diary for quality of life measurement in advanced breast cancer trials. Br J Cancer 67:341–346, 1993

    PubMed  Google Scholar 

  22. Fraser SCA, Dobbs HJ, Ebbs SR, Fallowfield LJ, Bates T, Baum M: Combination or mild single agent chemotherapy for advanced breast cancer? CMF vs epirubicin measuring quality of life. Br J Cancer 67:402–406, 1993

    PubMed  Google Scholar 

  23. Ganz PA, Haskell CM, Figlin RA, La Soto N, Siau J: Estimating the quality of life in a clinical trial of patients with metastatic lung cancer using the Karnofsky performance status and the functional living index — cancer. Cancer 61:849–856, 1988

    PubMed  Google Scholar 

  24. Ganz PA, Schag CAC, Lee JJ, Sim MS: The CARES, a generic measure of health-related quality of life for patients with cancer. Qual Life Res 1:19–29, 1992

    PubMed  Google Scholar 

  25. Ganz PA: Quality of life measures in cancer chemotherapy: methodology and implications. Pharm Econ 5:376–388, 1994

    Google Scholar 

  26. Geddes DM, Dones L, Hill E, et al: Quality of life during chemotherapy for small cell lung cancer: assessment and use of a daily diary card in a randomized trial. Eur J Cancer 26:484–492, 1990

    PubMed  Google Scholar 

  27. Gelber RD, Goldhirsch A, Cavalli F: Quality-of-life adjusted evaluation of adjuvant therapies for operable breast cancer. Ann Intern Med 114:621–628, 1991

    PubMed  Google Scholar 

  28. Gelber RD, Goldhirsch A: A new endpoint for the assessment of adjuvant therapy in postmenopausal women with operable breast cancer. J Clin Oncol 4:1772–1779, 1986

    PubMed  Google Scholar 

  29. The GIVIO Investigators: Impact of follow-up testing on survival and health-related quality of life in breast cancer patients: A multicenter randomized controlled trial. JAMA 271:1587–1592, 1994

    Google Scholar 

  30. Goldhirsch A, Gelber RD, Simes RJ, Glasziou P, Coates AS: Costs and benefits of adjuvant therapy in breast cancer: a quality adjusted survival analysis. J Clin Oncol 7:36–44, 1989

    PubMed  Google Scholar 

  31. Hayden KA, Moinpour CM, Metch B, et al: Pitfalls in quality of life assessment: Lessons from a Southwest Oncology Group breast cancer clinical trial. Oncol Nurs Forum 20:1415–1419, 1993

    PubMed  Google Scholar 

  32. Herr HW: Quality of life measurement in testicular cancer patients. Cancer 60:1412–1414, 1987

    PubMed  Google Scholar 

  33. Holmes S, Dickerson J: The quality of life: design and evaluation of a self-assessment instrument for use with cancer patients. Int J Nurs Stud 24:5–24, 1987

    Google Scholar 

  34. Holmes S: Use of a modified symptom distress scale in assessment of the cancer patient. Int J Nurs Stud 26:69–79, 1989

    PubMed  Google Scholar 

  35. Hopwood P, Howell A, Maguire P: Screening for psychiatric morbidity in patients with advanced breast cancer: validation of two self-report questionnaires. Br J Cancer 64:349–352, 1991

    PubMed  Google Scholar 

  36. Hopwood P, Howell A, Maguire P: Psychiatric morbidity in patients with advanced cancer of the breast: prevalence measured by two self-rating questionnaires. Br J Cancer 64:353–356, 1991

    PubMed  Google Scholar 

  37. Kaizer L, Warr D, Hoskins P, et al: Effect of schedule and maintenance on the antiemetic efficacy of ondansetron combined with dexamethasone in acute and delayed nausea and emesis in patients receiving moderately emetogenic chemotherapy: A phase III trial by the National Cancer Institute of Canada Clinical Trials Group. J Clin Oncol 12:1050–1057, 1994

    PubMed  Google Scholar 

  38. Karnofsky DA, Abelmann WH, et al: The use of nitrogen mustards in the palliative treatment of carcinoma. Cancer 1:634–656, 1948

    Google Scholar 

  39. Katz S, Ford AS, Moskowitz RW, Jackson BA, Jaffee MW: Studies of illness in the aged. The index of ADL: A standardized measure of biological and psychosocial function. JAMA 185:914–919, 1963

    PubMed  Google Scholar 

  40. Kornblith AB, Hollis DR, Zuckerman E, et al: Effect of megestrol acetate on quality of life in a doseresponse trial with women with advanced breast cancer. J Clin Oncol 11:2081–2089, 1993

    PubMed  Google Scholar 

  41. Kosty MP, Fleishman SB, Herdon JE, et al: Cisplatin, vinblastine, and hydrazine sulfate in advanced, non-small-cell cancer: A randomized placebo-controlled, double-blind phase II study of the Cancer and Leukemia Group B. J Clin Oncol 12:1113–1120, 1994

    PubMed  Google Scholar 

  42. Laufman LR, Bukowski RM, Collier MA, et al: A randomized double-blind trial of fluorouracil plus placebo versus fluorouracil plus oral leucovorin in patients with metastatic colorectal cancer. J Clin Oncol 11:1888–1893, 1993

    PubMed  Google Scholar 

  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 6:1798–1810, 1988

    PubMed  Google Scholar 

  44. Loprinzi CL, Kuross SA, O'Fallon JR, et al: Randomized placebo-controlled evaluation of hydrazine sulfate in patients with advanced colorectal cancer. J Clin Oncol 12:1121–1125, 1994

    PubMed  Google Scholar 

  45. Loprinzi CL, Goldberg RM, Su JQ, et al: Placebocontrolled trial of hydrazine sulfate in patients with newly diagnosed non-small-cell lung cancer. J Clin Oncol 12:1126–1129, 1994

    PubMed  Google Scholar 

  46. Moore MJ, Osoba D, Murphy K, et al: Use of palliative end points to evaluate the effects of mitoxantrone and low-dose prednisone in patients with hormonally resistant prostate cancer. J Clin Oncol 12:689–694, 1994

    PubMed  Google Scholar 

  47. Morrow GR, Linke J, Black P: Measurement of quality of life in patients: psychometric analysis of the functional living index — cancer (FLIC). Qual Life Res 1:287–296, 1992

    PubMed  Google Scholar 

  48. Ovesen L, Allingstrup L, Hannibal J, et al: Effect of dietary counseling on food intake, body weight, response rate, survival and quality of life in cancer patients under going chemotherapy: A prospective randomized study. J Clin Oncol 11:2043–2049, 1993

    PubMed  Google Scholar 

  49. Peters WP, Ross M, Vredenburgh JJ, et al: Highdose chemotherapy and autologous bone marrow support as consolidation after standard-dose adjuvant therapy for high-risk primary breast cancer. J Clin Oncol 11:1132–1143, 1993

    PubMed  Google Scholar 

  50. Priestman TJ, Baum M: Evaluation of quality of life in patients receiving treatment for advanced breast cancer. Lancet 1:899–890, 1976

    PubMed  Google Scholar 

  51. Pujol JL, Monnier A, Berille J, et al: Phase II study of nitrosourea fotemustine as single drug chemotherapy in poor-prognosis non-small-cell lung cancer. Br J Cancer 69:1136–1140, 1994

    PubMed  Google Scholar 

  52. Ringdal GI, Ringdal K, Kvinnsland S, Gotestam KG: Quality of life of cancer patients with different prognoses. Qual Life Res 3:143–154, 1994

    PubMed  Google Scholar 

  53. Rudd R, Allen R, Berille J, Spiro SG, Trask C, Souhami RL: Phase II study of fotemustine in untreated inoperable non-small-cell lung cancer. Cancer Chemother Pharmacol 34:444–446, 1994

    PubMed  Google Scholar 

  54. Sarna L: Women with lung cancer: impact on quality of life. Qual Life Res 2:13–22, 1993

    PubMed  Google Scholar 

  55. Schag CAC, Ganz PA, Heinrich RL: Cancer rehabilitation evaluation system-short form (CARES-SF). A cancer specific rehabilitation and quality of life instrument. Cancer 68:1406–1413, 1991

    PubMed  Google Scholar 

  56. Schipper H, Clinch J, McMurray A, Levitt M: Measuring the quality of life of cancer patients: the functional living index — cancer: development and validation. J Clin Oncol 2:472–483, 1984

    Google Scholar 

  57. Selby PJ, Chapman JAW, Etazadi-Amoli J, Dalley D, Boyd NF: The development of a method for assessing the quality of life of cancer patients. Br J Cancer 50:13–22, 1984

    PubMed  Google Scholar 

  58. Silberfarb PM, Holland JCB, et al. Psychological response of patients receiving two drug regimens for lung carcinoma. Am J Psychiatry 140:110–111, 1983

    PubMed  Google Scholar 

  59. Spitzer WO, Dobson AJ, Hall J, et al: Measuring the quality of life of cancer patients: A concise QL-index for use by physicians. J Chron Dis 34:585–597, 1981

    PubMed  Google Scholar 

  60. Sprangers MAG, Cull A, Bjordal K, Groenvold M, Aaronson NK: The European Organization for Research and Treatment of Cancer approach to quality of life assessment: guidelines for developing questionnaire modules. Qual Life Res 2:287–295, 1993

    PubMed  Google Scholar 

  61. Twelves CJ, Dobbs NA, Lawrence MA, et al: Iododoxorubicin in advanced breast cancer: A phase II evaluation of clinical activity, pharmacology and quality of life. Br J Cancer 69:726–731, 1994

    PubMed  Google Scholar 

  62. Wolf M, Pritsch M, Drings P, et al: Cyclic-alternating versus response-oriented chemotherapy in small-cell lung cancer: a German multicenter randomized trial of 321 patients. J Clin Oncol 9:614–624, 1991

    PubMed  Google Scholar 

  63. Yellen SB, Cella DF, Leslie WT: Age and clinical decision making in oncology patients. J Natl Cancer Inst 86:1766–1770, 1994

    PubMed  Google Scholar 

  64. Adday LA, Chiu GY, Anderson R: Methodological issues in health care surveys of the Spanish heritage population. Am J Public Health 70:367–374, 1980

    PubMed  Google Scholar 

  65. Ahmad WIU, Kernohan EEM, Baker MR: Influence of ethnicity and unemployment on the perceived health of a sample of general practice attenders. Community Med 11:148–156, 1989

    PubMed  Google Scholar 

  66. Alonso J, Antù JM, Moreno C: Spanish version of the Nottingham health profile: translation and preliminary validity. Am J Pub Health 80:704–708, 1990

    PubMed  Google Scholar 

  67. Balaban DJ, Fagi PC, Goldfarb NI, Nettler S: Weights for scoring the Quality of Well-Being instrument among rheumatoid arthritics. Med Care 24:973–980, 1986

    PubMed  Google Scholar 

  68. Baum FE, Cooke RD: Community-health needs assessment: use of the Nottingham Health Profile in an Australian study. Med J Aust 150:581–590, 1989

    PubMed  Google Scholar 

  69. Bergner M, Bobitt RA, et al: The Sickness Impact Profile: conceptual formulation and methodology for the development of a health status measure. Int J Health Ser 6:393–415, 1976

    PubMed  Google Scholar 

  70. Berkanovic E: The effect of inadequate language translation of Hispanics' response to health surveys. Am J Public Health 70:1273–1281, 1980

    PubMed  Google Scholar 

  71. Bombardier C, Ware J, Russell IJ, et al: Auranofin therapy and quality of life in patients with rheumatoid arthritis. Am J Med 81:565–577, 1986

    PubMed  Google Scholar 

  72. Bousquet J, Bullinger M, Fayol C, et al: Assessment of quality of life in patients with perennial allergic rhinitis with the French version of the SF-36 Health Status Questionnaire. J Allergy Clin Immunol 94:182–188, 1994

    PubMed  Google Scholar 

  73. Boyle MH, Furlong W, Feeny D, Torrance GW, Hatcher J: Reliability of the Health Utilities Index—Mark III used in the 1991 cycle 6 Canadian General Social Survey Health Questionnaire. Qual Life Res 3:249–257, 1995

    Google Scholar 

  74. Brazier JE, Harper R, Jones NMB, et al: Validating the SF-36 health survey questionnaire: A new outcome measure for primary care. Br Med J 305:160–164, 1992

    Google Scholar 

  75. Brooks RG, Jendteg S, Lindgren B, Persson U, Bjork S: EuroQol: Health-related quality of life measurement. Results of the Swedish questionnaire exercise. Health Policy 18:37–48, 1991

    PubMed  Google Scholar 

  76. Brorsson B, Ifver J, Hays RD: The Swedish healthrelated quality of life survey (SWED-QUAL). Qual Life Res 2:33–45, 1993

    PubMed  Google Scholar 

  77. Bucquet D, Condon S, Ritchie K: The French version of the Nottingham health profile. A comparison of item weights with those of the source version. Soc Sci Med 30:829–835, 1990

    PubMed  Google Scholar 

  78. Bucquet D, Curtis S: Socio-demographic variation in perceived illness and the use of primary care: The value of community survey data for primary care service planning. Soc Sci Med 23:737–744, 1986

    PubMed  Google Scholar 

  79. Burkhardt CS, Archenholtz B, Bjelle A: Measuring the quality of life of women with rhematoid arthritis or systemic lupus erythematosus: A Swedish version of the quality of life scale. Scand J Rheumatol 21:190–195, 1992

    PubMed  Google Scholar 

  80. Campos SS, Johnson TM: Cultural considerations.In: Spilker B (ed) Quality of Life Assessments in Clinical Trials. Raven Press, New York, 1990

    Google Scholar 

  81. Chan DW, Chan TSC: Reliability, validity and the structure of the general health questionnaire in a Chinese context. Psychol Med 13:363–371, 1983

    PubMed  Google Scholar 

  82. Chwalow AJ, Lurie A, Bean K, et al: A French version of the sickness impact profile: stages in the cross cultural validation of a generic quality of life scale. Fund Clin Pharmacol 6:319–326, 1992

    Google Scholar 

  83. Coulton CJ, Hyduk CM, Chow JC: An assessment of the arthritis impact measurement scales in 3 ethnic groups. J Rheumatol 16:1110–1115, 1989

    PubMed  Google Scholar 

  84. Croog SH, Kong BW, Levine S, et al: Hypertensive black men and women: quality of life and effects of antihypertensive mediations. Arch Intern Med 150:1733–1741, 1990

    PubMed  Google Scholar 

  85. Croog SH, Levine S, Testa MA, et al: The effects of antihypertensive therapy on the quality of life. N Engl J Med 314:1657–1664, 1986

    PubMed  Google Scholar 

  86. Davis GL, Balart LA, Schiff ER, et al: Assessing health related quality of life in chronic hepatitis C using the Sickness Impact Profile. Clin Ther 16:334–343, 1994

    PubMed  Google Scholar 

  87. Detsky AS, McLaughlin JR, Abrams HB, et al: Quality of life of patients on long-term parenteral nutrition at home. J Gen Int Med 1:26–33, 1986

    Google Scholar 

  88. Deyo RA, Centor RM: Assessing the responsiveness of functional scales to clinical change: an analogy to diagnostic test performance. J Chron Dis 39:897–906, 1986

    PubMed  Google Scholar 

  89. Deyo RA: Pitfalls in measuring the health status of Mexican-Americans: Comparative validity of the English and Spanish Sickness Impact Profile. Am J Public Health 74:569–573, 1984

    PubMed  Google Scholar 

  90. Drossman DA, Patrick DL, Mitchell CM, Zagami EA, Applebaum MI: Health related quality of life in inflammatory bowel disease: Functional status and patient worries and concerns. Digestive Diseases and Sciences 34:1379–1386, 1989

    PubMed  Google Scholar 

  91. Ekdahl C, Eberhardt K, Andersson I, Svensson B: Assessing disability in patients with rheumatoid arthritis. Use of a Swedish version of the Stanford health assessment questionnaire. Scand J Rheumatol 17:263–271, 1988

    PubMed  Google Scholar 

  92. The EuroQol Group: EuroQol — A new facility for the measurement of health related quality of life. Health Policy 16:199–208, 1990

    Google Scholar 

  93. Ferraz MB, Oliveira LM, Araujo PMP, Atra E, Tugwell P: Crosscultural reliability of the physical ability dimension of the health assessment questionaire. J Rheumatol 17:813–817, 1990

    PubMed  Google Scholar 

  94. Fitzpatrick R, Fletcher A, Gore S, Jones D, Spiegelhalter D, Cox D: Quality of life measures in health care, I: applications and issues in assessment. BMJ 305:1074–1077, 1992

    PubMed  Google Scholar 

  95. Flanagan JC: Measurement of quality of life: current state of the art. Arch Phys Rehabil 63:56–59, 1982

    Google Scholar 

  96. Fryback DG, Dasbach EJ, Klein R: The Beaver Dam Health Outcomes Study: Initial catalog of health-state quality factors. Med Decis Making 13:89–102, 1993

    PubMed  Google Scholar 

  97. Gill TM, Feinstein AR: A critical appraisal of the quality of Quality-of-Life measurements. JAMA 272:619–626, 1994

    PubMed  Google Scholar 

  98. Gilson BS, Erikson D, Chavez CT, Bobbit RA, Bergner M, Carter WB: A Chicano version of the sickness impact profile. Cult Med Psych 4:137–150, 1980

    Google Scholar 

  99. Glik DC, Steadman MS, Pharm D, Michels PJ, Mallin R: Antihypertensive regimen and quality of life in a disadvantaged population. J Fam Pract 30:143–149, 1990

    PubMed  Google Scholar 

  100. Guillemin F, Bombardier C, Beaton D: Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol 46:1417–1432, 1993

    PubMed  Google Scholar 

  101. Guyatt GH, Feeny DH, Patrick DL: Measuring health related quality of life. Ann Int Med 118:622–629, 1993

    PubMed  Google Scholar 

  102. Guyatt GH, Deyo RA, Charlson M, Levine MN, Mitchell A: Responsiveness and validity in health status measurement: a clarification. J Clin Epidemiol 42:403–408, 1989

    PubMed  Google Scholar 

  103. Guyatt G, Walter S, Norman G: Measuring change over time: asessing the usefulness of evaluative instruments. J Chron Dis 40:171–178, 1987

    PubMed  Google Scholar 

  104. Guyatt GH, Thompson PJ, Berman LB, et al: How should we measure function in patients with chronic heart and lung disease? J Chron Dis 38:517–524, 1985

    PubMed  Google Scholar 

  105. Hayry M: Measuring the quality of life: Why, how, and what? Theor Med 12:97–116, 1991

    PubMed  Google Scholar 

  106. Hendricson WD, Russell J, Prihoda TJ, Jacobson JM, Rogan A, Bishop GD: An approach to developing a valid Spanish language translation of a health-status questionnaire. Med Care 27:959–966, 1989

    PubMed  Google Scholar 

  107. Hendricson WD, Russel IJ, Prihoda TJ, et al: Development and inital validation of a dual-language English-Spanish format for the Arthritis Impact Measurement Scales. Arth Rheum 32:1153–1159, 1989

    Google Scholar 

  108. Hill J, Bird A, Lawton CW, Wright V: The Arthritis Impact Measurement Scales: an Anglicized version to assess the outcome of British patients with rheumatoid athritis. Br J Rheumatol 29:193–196, 1990

    PubMed  Google Scholar 

  109. Howard CA, Samet JM, Buechley RW, Schrag SD, Key CR: Survey research in New Mexico Hispanics: Some methodological issues. Am J Epidemiol 117:27–34, 1983

    PubMed  Google Scholar 

  110. Hunt SM, Ingela W: Cross-cultural variation in weighting of health statements: A comparison of English and Swedish valuations. Health Policy 8:227–235, 1987

    Google Scholar 

  111. Hunt S, McKenna SP, McEwen J, et al: The Nottingham Health Profile: Subjective health status and medical consultations. Soc Sci Med 15A:221–229, 1981

    Google Scholar 

  112. Jenkinson C, Coulter A, Wright L: The short form 36 (SF-36) health survey questionnaire: Normative data for adults of working age. Br Med J 306:1437–1440, 1993

    Google Scholar 

  113. Johnson FL, Cook E, Foxall MJ, Kelleher E, Kentopp E, Mannlein EA: Life satisfaction of the elderly American Indian. Int J Nurs Stud 23:265–273, 1986

    PubMed  Google Scholar 

  114. Jones PW: Quality of life, symptoms and pulmonary function in asthma: Long-term treatment with nedocromil sodium examined in a controlled multicentre trial. Eur Respir J 7:55–62, 1994

    PubMed  Google Scholar 

  115. Kagawa-Singer M: Redifining health: Living with cancer. Soc Sci Med 37:295–304, 1993

    PubMed  Google Scholar 

  116. Kaplan RM, Anderson JP, Wu AW, et al: The Quality of Well Being Scale: Applications in AIDS, cystic fibrosis, and arthritis. Med Care 24:973–980, 1986

    PubMed  Google Scholar 

  117. Kaplan RM, Atkins CJ, Timms R: Validity of a quality of well being scale as an outcome measure in chronic obstructive pulmonary disease. J Chron Dis 37:85–95, 1984

    PubMed  Google Scholar 

  118. Kaplan RM, Bush JW: Health related quality of life measurement for evaluation research and policy analysis. Health Psychol 1:61–80, 1982

    Google Scholar 

  119. Kaplan RM, Bush JW, Bern CC: Health status: Types of validity and the index of well-being. Health Serv Res 11:478–527, 1976

    PubMed  Google Scholar 

  120. Kirwan JR, Reeback JS: Stanford Health Assessment Questionnaire modified to assess disability in British patients with rheumatoid arthritis. Br J Rheumatol 25:206–209, 1986

    PubMed  Google Scholar 

  121. Landrine H, Klonoff EA: Culture and health-related schemas: A review and proposal for interdisciplinary integration. Health Psychol 11:267–276, 1992

    PubMed  Google Scholar 

  122. Laupacis A, Bourne R, Rorabeck, et al: The effect of elective total hip replacement on health-related quality of life. J Bone Joint Surg Am 11:1619–1626, 1993

    Google Scholar 

  123. Lenderking WR, Gelber RD, Cotton DJ, et al: Evaluation of the quality of life associated with zidovudine treatment in asymptomatic human immunodeficiency virus infection. N Engl J Med 330:738–743, 1994

    PubMed  Google Scholar 

  124. Llewellyn-Thomas H, Sutherland HJ, Tibshirani R, Ciampi A, Till JE, Boyd NF: Describing health states: methodological issues in obtaining values for health states. Med Care 22:543–552, 1984

    PubMed  Google Scholar 

  125. Lyons RA, Perry HM, Littlepage BN: Evidence for the validity of the Short-Form 36 Questionnaire (SF-36) in an elderly population. Age Aging 23:182–184, 1994

    Google Scholar 

  126. MacKenzie CR, Charlson ME, DiGioia D, Kelley K: Can the Sickness Impact Profile measure change? An example of scale assessment. J Chron Dis 39:429–438, 1986

    PubMed  Google Scholar 

  127. Mathias SD, Fifer SK, Patrick DL: Rapid translation of quality of life measures for international clinical trials: Avoiding errors in the minimalist approach. Qual Life Res 3:403–412, 1994

    PubMed  Google Scholar 

  128. Mauskopf J, Austin R, Dix L, Berzon R: The Nottingham Health Profile as a measure of quality of life in zoster patients: Convergent and discriminant validity. Qual Life Res 3:431–435, 1994

    PubMed  Google Scholar 

  129. Mays VM, Jackson JS: AIDS survey methodology with Black Americans. Soc Sci Med 31:47–54, 1991

    Google Scholar 

  130. McGraw SA, McKinlay JB, Crawford SA, Costa LA, Cohen DL: Health survey methods with minority populations: some lessons from recent experience. Ethnic Dis 2:273–287, 1992

    Google Scholar 

  131. McHorney CA, Ware JE, Rachel Lu JF, Sherbourne CD: 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 32:40–66, 1994

    PubMed  Google Scholar 

  132. McNeil BJ, Weichselbaum R, Pauker SG: Tradeoffs between quality and quantity of life in laryngeal cancer. N Engl J Med 305:982–987, 1981

    PubMed  Google Scholar 

  133. McSweeny AJ, Grant I, Heaton RK, et al: Life quality of patients with chronic obstructive pulmonary disease. Arch Intern Med 142:473–478, 1982

    PubMed  Google Scholar 

  134. Mulrow CD, Gerety MB, Kanten D, et al: A randomized trial of physical rehabilitation for very frail nursing home residents. JAMA 271:519–524, 1994

    PubMed  Google Scholar 

  135. Nord E: EuroQol: Health-related quality of life measurement. Valuations of health states by the general public in Norway. Health Policy 18:25–36, 1991

    PubMed  Google Scholar 

  136. O'Brien B: Measurement of health-related quality of life in the economic evaluationsn of medicines. Drug Info J 28:45–53, 1994

    Google Scholar 

  137. Ott CR, Sivarajan ES, Newton KM, et al: A controlled randomized study of early cardiac rehabilitation: The Sickness Impact Profile as an assessment tool. Heart Lung 12:162–170, 1983

    PubMed  Google Scholar 

  138. Patrick DL, Bergner M: Measurement of health status in the 1990s. Annu Rev Public Health 11:165–183, 1990

    PubMed  Google Scholar 

  139. Patrick DL, Sittampalam Y, Somerville SM, Carter WB, Bergner M: A cross-cultural comparison of health status values. Am J Public Health 71:402–407, 1985

    Google Scholar 

  140. Prigatano GP, Wright EC, Levin D: Quality of life and its predictors in patients with mild hypoxemia and chronic obstructive pulmonary disease. Arch Internal Med 144:1613–1619, 1984

    Google Scholar 

  141. Rothman ML, Hedrick SC, Bulcroft KA, Hickman DH, Rubenstein LZ: The validity of proxy-generated scores as measures of patient health status. Med Care 29:115–124, 1991

    PubMed  Google Scholar 

  142. Salek MS, Finlay AY, Luscombe DK, et al: Cyclosporin greatly improves the quality of life of adults with severe atopic dermatitis: A randomized, doubleblind, placebo-controlled trial. Br J Dermatol 129:422–430, 1993

    PubMed  Google Scholar 

  143. Samplis JS, Pouchot J, Beaudet F, et al: Arthritis impact measurement scales: reliablitiy of a French version and validity in adult Still's disease. J Rheumatol 17:1657–1661, 1990

    PubMed  Google Scholar 

  144. Schulman KA, Buxton M, Glick H, et al: Results of the economic evaluation of the FIRST Study: A multinational perspective economic evaluation. Int J Technol Assessment in Health Care (in press)

  145. Slevin ML, Plant H, Lynch D, Drinkwater J, Gregory WM: Who should measure quality of life, the doctor or the patient? Br J Cancer 57:109–112, 1988

    PubMed  Google Scholar 

  146. Solomon GD, Skobieranda FG, Gragg LA: Quality of life and well-being of headache patients: measurement by the medical outcomes study instrument. Headache 33:351–358, 1993

    PubMed  Google Scholar 

  147. Stewart AL, Ware JE (eds): Measuring Functioning and Well-Being. Duke University Press, Durham, 1992

    Google Scholar 

  148. Sundar S, Rajan AG, Somani PN, Kumar K: The effects of antihypertensive agents on the quality of life in Indian hypertensives. Acta Cardiologica 46:227–235, 1991

    PubMed  Google Scholar 

  149. Toevs, CD, Kaplan RM, Atkins CJ: The costs and effects of behavioral programs in chronic obstructive pulmonary disease. Med Care 22:1088–1100, 1984

    PubMed  Google Scholar 

  150. Torrance GW: Measurement of health state utilities for economic appraisal — a review. J Health Economics 5:1–30, 1986

    Google Scholar 

  151. Torrance GW, Feeny D: Utilities and quality-adjusted life years. International Journal of Technology Assessment in Health Care 5:559–575, 1989

    PubMed  Google Scholar 

  152. Torrance GW, Thomas WH, Sackett DL: A utility maximizing model for evaluation of health care programs. Health Serv Res 7:118–133, 1972

    PubMed  Google Scholar 

  153. Wachtel T, Piette J, Mor V, Stein M, Fleishman J, Carpenter C: Quality of life in persons with Human Immunodeficiency Virus infection: Measurement by the Medical Outcomes Study Instrument. Ann Int Med 116:129–137, 1992

    PubMed  Google Scholar 

  154. Wilkin D, Leavey R: A comparison of two survey measures of health status. Soc Sci Med 27:269–275, 1988

    PubMed  Google Scholar 

  155. Wilklund I, Romanus B, Hunt SM: Self assessed disability in patients with arthrosis of the hip joint: Reliability of the Swedish version of the Nottingham Health Profile. Int Disabil Studies 10:159–163, 1988

    Google Scholar 

  156. NIH guidelines on the inclusion of women and minorities as subjects in clincial research. Federal Register, March 28, 1994 (59 FR 14508–14513)

  157. Blendon, RJ, Aiken LH, Freeman HE, Corey CR: Access to medical care for black and white Americans. JAMA 261:278–281, 1989

    PubMed  Google Scholar 

  158. Ford E, Cooper R, Castaner Q, Simmons B, Mar M: Coronary arteriography and coronary bypass surgery among whites and other racial groups relative to hospital-based incidence rates for coronary artery disease: findings from NHDS. Am J Pub Health 79:437–440, 1989

    PubMed  Google Scholar 

  159. Gittelsohn AM, Halpern J, Sanchez RL: Income, race and surgery in Maryland. Am J Public Health 81:1435–1440, 1991

    PubMed  Google Scholar 

  160. Goldberg KC, Hartz AJ, Jacobsen SJ, Krakauer H, Rimm AA: Racial and community factors influencing coronary artery bypass graft surgery rates for all 1986 medicare patients. JAMA 267:1473–1477, 1992

    PubMed  Google Scholar 

  161. Hannan EL, Kilburn H, O'Donnell JF, Lukacik G, Shields EP: Interracial access to selected cardiac procedures for patients hospitalized with coronary artery disease in New York state. Med Care 29:430–441, 1991

    PubMed  Google Scholar 

  162. Hayward RA, Shapiro MF, Freeman HE, Corey CR: Inequities in health services among insured Americans: do working age adults have less access to medical care than the elderly? N Engl J Med 318:1507–1512, 1988

    PubMed  Google Scholar 

  163. Javitt JC, McBean AM, Nicholson GA, Babish JD, Warren JL, Krakauer H: Undertreatment of glaucoma among black Americans. N Engl J Med 325:1418–1422, 1991

    PubMed  Google Scholar 

  164. Kasiske BL, Neylan JF, Riggio RR, et al: The effect of race on access and outcome in transplantation. N Engl J Med 324:302–307, 1991

    PubMed  Google Scholar 

  165. Mitchell RA, Imperial E, Zhou D, et al: A crosscultural assessment of perceived health problems in the elderly. Disabil Rehabil 14:133–135, 1992

    PubMed  Google Scholar 

  166. Strogatz DS: Use of medical care for chest pain: differences between blacks and whites. Am J Public Health 80:290–294, 1990

    PubMed  Google Scholar 

  167. Trevino FM, Moyer E, Valdez B, Stroup-Benham CA: Health insurance coverage and utilization of health services by Mexican Americans, mainland Puerto Ricans, and Cuban Americans. JAMA 265:233–237, 1991

    PubMed  Google Scholar 

  168. Wenneker MB, Epstein AM: Racial inequities in the use of procedures for patients with ischemic heart disease in Massachusetts. JAMA 261:253–257, 1989

    PubMed  Google Scholar 

  169. Wilson PA, Griffith JR, Tedeschi PJ: Does race affect hospital use? Am J Public Health 75:263–269, 1985

    PubMed  Google Scholar 

  170. Yergan J, Flood AB, LoGerfo JP, Diehr P: Relationship between patient race and the intensity of hospital services. Med Care 25:592–603, 1987

    PubMed  Google Scholar 

  171. Ahmed F, McRae JA, Ahmed N: Factors associated with not receiving adequate prenatal care in an urban black population: Program planning implications. Social Work in Health Care 14:107–123, 1990

    PubMed  Google Scholar 

  172. Alcalay R, Ghee A, Scrimshaw S: Designing prenatal care messages for low income Mexican women. Public Health Reports 108:354–362, 1993

    PubMed  Google Scholar 

  173. Becerra JE, Hogue CJ, Atrash HK, Perez N: Infant mortality among Hispanics: A portrait of heterogeneity. JAMA 265:217–221, 1991

    PubMed  Google Scholar 

  174. Boone MS: Social and cultural factors in the etiology of low birthweight among disadvantaged blacks. Soc Sci Med 20:1001–1011, 1985

    PubMed  Google Scholar 

  175. Blankson ML, Cliver SP, Goldenberg RL, Hickey CA, Jui J, Dubard MB: Health behavior and outcomes in sequential pregnancies of black and white adolescents. JAMA 269:1401–1403, 1993

    PubMed  Google Scholar 

  176. Cabral H, Fried LE, Levenson S, Amaro H, Zuckerman B: Foreign-born and US-born black women: Differences in health behaviors and birth outcomes. Am J Public Health 80:70–72, 1990

    PubMed  Google Scholar 

  177. Costas R, Garcia-Palmieri MR, Sorlie P, Hertzmark E: Coronary heart disease risk factors in men with light and dark skin in Puerto Rico. Am J Public Health 71:614–619, 1981

    PubMed  Google Scholar 

  178. Freeman HP, Wasfie TJ: Cancer of the breast in poor black women. Cancer 63:2562–2569, 1989

    PubMed  Google Scholar 

  179. James S: Socioeconomic influences on coronary heart disease in black populations. Am Heart J 108:669–672, 1984

    PubMed  Google Scholar 

  180. Kempe A, Wise PH, Barkan SE, et al: Clinical determinants of the racial disparity in very low birth weight. N Engl J Med 327:969–973, 1992

    PubMed  Google Scholar 

  181. Liao Y, Cooper RS, Ghali JK, Szocka A: Survival rates with coronary artery disease for black women compared with black men. JAMA 268:1867–1871, 1992

    PubMed  Google Scholar 

  182. Lieberman E, Ryan KJ, Monson RR, Schoenbaum SC: Risk factors accounting for racial differences in the rate of premature birth. N Engl J Med 317:743–748, 1987

    PubMed  Google Scholar 

  183. Maynard C, Fisher L, Passamani ER: Survival of black persons compared with white persons in the coronary artery surgery study (CASS). Am J Cardiology 60:513–518, 1987

    Google Scholar 

  184. Schoendorf KC, Hogue CJR, Kleinman JC, Rowley D: Mortality among infants of black as compared with white college educated parents. N Engl J Med 326:1522–1526, 1992

    PubMed  Google Scholar 

  185. Sommer A, Tielsch JM, Katz J, et al: Racial differences in the cause-specific prevalence of blindness in East Baltimore. N Engl J Med 325:1412–1417, 1991

    PubMed  Google Scholar 

  186. Vernon SW, Tilley BC, Neale AV, Steinfeldt L: Ethnicity, survival, and delay in seeking treatment for symptoms of breast cancer. Cancer 55:1563–1571, 1985

    PubMed  Google Scholar 

  187. Callender CO: Organ donation in blacks: a community approach. Transplant Proceedings 19:1551–1554, 1987

    Google Scholar 

  188. Crockett SJ, Heller KE, Merkel JM, Peterson JM: Assessing beliefs of older rural Americans about nutrition education: Use of the focus group approach. J Am Dietetic Assoc 90:563–567, 1991

    Google Scholar 

  189. Furnham A, Forey J: The attitute, behaviors and beliefs of patients of conventional vs. complementary (alternative) medicine. J Clin Psychol 50:458–469, 1994

    PubMed  Google Scholar 

  190. Hogan DP, et al: Social and environmental factors influencing contraceptive use among Black adolescents. Family Planning Perspectives 17:165–169, 1985

    PubMed  Google Scholar 

  191. Mo B: Modesty, sexuality, and breast health in Chinese-American women. West J Med 157:260–264, 1992

    PubMed  Google Scholar 

  192. Pachter LM: Culture and clinical care: Folk illness beliefs and behaviors and their implications for health care delivery. JAMA 271:690–694, 1994

    PubMed  Google Scholar 

  193. Perez-Stable EJ, Sabogal F, Otero-Sabogal R, et al: Misconceptions about cancer among Latinos and Anglos. JAMA 268:3219–3223, 1992

    PubMed  Google Scholar 

  194. Schulman KA, Rubinstein LE, Chesley FD, Eisenberg JM: The roles of race and socioeconomic factors in health services research. Health Serv Res 30:179–195, 1995

    PubMed  Google Scholar 

  195. Sung J, McGrady G, Rowley D, et al: Interactive effect of race and marital status in low birth weight. Ethnic Dis 3:130–136, 1993

    Google Scholar 

  196. von Neuman J, Morgenstern O: Theory of Games and Economic Behavior (3rd edn). Wiley, New York, 1953

    Google Scholar 

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Yabroff, K.R., Linas, B.P. & Schulman, K. Evaluation of quality of life for diverse patient populations. Breast Cancer Res Tr 40, 87–104 (1996). https://doi.org/10.1007/BF01806005

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