Quality of Life Research

, Volume 14, Issue 4, pp 1007–1023

Assessing Quality of Life in Adult Cancer Survivors (QLACS)

  • Nancy E. Avis
  • Kevin W. Smith
  • Sarah McGraw
  • Roselyn G. Smith
  • Vida M. Petronis
  • Charles S. Carver
Article

Abstract

This article describes development of a quality of life measure designed to assess issues relevant to long-term cancer survivors. In-depth semi-structured interviews were conducted with 58 long-term cancer survivors to identify domains most relevant to long-term survivors (≥ 5 years post-diagnosis). Self-report items were developed from these interviews and administered to a second sample of 242 long-term survivors. Domains and items were selected from the item pool by a combination of factor analysis and criterion-based item selection. Five cancer-specific domains were identified (appearance concerns, financial problems, distress over recurrence, family-related distress, and benefits of cancer) along with seven generic QOL domains (negative feelings, positive feelings, cognitive problems, sexual problems, physical pain, fatigue, and social avoidance). Cronbach’s α was 0.72 or greater for each domain. Correlations between domain scores and criterion measures were 0.72 or higher in all but one generic domain (social avoidance), but somewhat lower on cancer-specific domains. The new multidimensional measure has good internal consistency and validity and is appropriate for comparisons between cancer and non-cancer populations, as well as long-term follow-up of cancer patients.

Keywords

Cancer survivors Instrument development Quality of life 

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References

  1. 1.
    Bottomley, A. 2002The cancer patient and quality of lifeThe Oncologist7120125PubMedGoogle Scholar
  2. 2.
    Gotay, CC, Korn, EL, McCabe, MS, Moore, TD, Cheson, BD. 1992Quality of life assessment in cancer treatment protocols: Research issues in protocol developmentJ Natl Cancer Inst84575579PubMedGoogle Scholar
  3. 3.
    Tanaka, T, Gotay, CC. 1998Physicians’ and medical students’ perspectives on patients’ quality of lifeAcad Med7310031005PubMedGoogle Scholar
  4. 4.
    Vinokur, AD, Threatt, BA, Vinokur-Kaplan, D, Satariano, WA. 1990The process of recovery from breast cancer for younger and older patients. Changes during the first yearCancer6512421254PubMedGoogle Scholar
  5. 5.
    McDonough, EM, Varvares, MA, Dunphy, FR, Dunleavy, T, Dunphy, CH, Boyd, JH. 1996Changes in quality-of-life scores in a population of patients treated for squamous cell carcinoma of the head and neckHead Neck18487493PubMedGoogle Scholar
  6. 6.
    Ganz, PA, Coscarelli, A, Fred, C, Kahn, B, Polinsky, ML, Petersen, L. 1996Breast cancer survivors: Psychosocial concerns and quality of lifeBreast Cancer Res Treat38183199PubMedGoogle Scholar
  7. 7.
    Andrykowski, MA, Bruehl, S, Brady, MJ, Henslee-Downey, PJ. 1995Physical and psychosocial status of adults one year after bone marrow transplantation: A prospective studyBone Marrow Transplant.15837844PubMedGoogle Scholar
  8. 8.
    Padilla, GV, Grant, MM, Lipsett, J, Anderson, PR, Rhiner, M, Bogen, C. 1992Health quality of life and colorectal cancerCancer.7014501456PubMedGoogle Scholar
  9. 9.
    Parker, PA, Baile, WF, deMoor, C, Cohen, L. 2003Psychosocial and demographic predictors of quality of life in a large sample of cancer patientsPsycho-Oncology.12183193PubMedGoogle Scholar
  10. 10.
    Osoba, D eds. 1991The Effect of Cancer on Quality of LifeBoca RatonCRC press Inc.Google Scholar
  11. 11.
    Glanz, K, Lerman, C. 1992Psychological impact of breast cancer: A critical reviewAnn Behav Med.14204212Google Scholar
  12. 12.
    Haes, JC, Knippenberg, FC. 1985The quality of life of cancer patients: A review of the literatureSoc Sci Med.20809817PubMedGoogle Scholar
  13. 13.
    Conroy, T, Blazeby, JM. 2003Health-related quality of life in colorectal patientsExpert Rev Anticancer Ther.3493504PubMedGoogle Scholar
  14. 14.
    Parker, SL, Tong, T, Bolden, S, Wingo, PA. 1997Cancer Statistics 1997CA Cancer J Clin.47527PubMedGoogle Scholar
  15. 15.
    Office of Cancer Survivorship website, http://cancercontrol.cancer.gov, 2003Google Scholar
  16. 16.
    American Society of Clinical Oncology1996Outcomes of cancer treatment for technology assessment and cancer treatment guidelinesJ Clin Oncol.14671679Google Scholar
  17. 17.
    Gotay, CC, Muraoka, M. 1998Quality of life in long-term survivors of cancerJ Natl Cancer Inst.90656667PubMedGoogle Scholar
  18. 18.
    Ferrell, BR, Hassey Dow, K, Grant, M. 1995Measurement of the quality of life in cancer survivorsQual Life Res.4523531PubMedGoogle Scholar
  19. 19.
    Moinpour, CM, Feigl, P, Metch, B, Hayden, KA, Meyskens, FL,Jr, Crowley, J. 1989Quality of life end points in cancer clinical trials: Review and recommendationsJ Natl Cancer Inst.81485495PubMedGoogle Scholar
  20. 20.
    Nayfield, SG, Ganz, PA, Moinpour, CM, Cella, DF, Hailey, BJ. 1992Report from a National Cancer Institute (USA) workshop on quality of life assessment in cancer clinical trialsQual Life Res1203210PubMedGoogle Scholar
  21. 21.
    Dorval, M, Maunsell, E, Deschenes, L, Brisson, J, Masse, B. 1998Long-term quality of life after breast cancer: Comparison of 8-year survivors with population controlsJ Clin Oncol.16487494PubMedGoogle Scholar
  22. 22.
    Ganz, P, Desmond, KA, Leedham, B, Rowland, JH, Meyerowitz, BE, Belin, TR. 2002Quality of life in long-term, disease-free survivors of breast cancer: A follow-up studyJ Natl Cancer Inst.943949PubMedGoogle Scholar
  23. 23.
    Mosconi, P, Apolone, G, Barni, S, Secondino, S, Sbanotto, A, Filiberti, A. 2002Quality of life in breast and colon cancer long-term survivors: An assessment with the EORTC QLQ-C30 and SF-36 questionnairesTumori.88110116PubMedGoogle Scholar
  24. 24.
    Steer, CB, Marx, GM, Galani, E, Harper, PG, Khayat, D. 2002Quality of life: It’s never too lateJ Clin Oncol.2029152917PubMedGoogle Scholar
  25. 25.
    Wyatt, G, Kurtz, ME, Friedman, LL, Given, B, Given, C. 1996Preliminary testing of the long-term quality of life (LTQL) instrument for female cancer survivorsJ Nurs Measure4153169Google Scholar
  26. 26.
    Ganz, PA 2001Late effects of cancer and its treatmentSemin Oncol Nurs.17241248PubMedGoogle Scholar
  27. 27.
    Bloom, JR 2002Surviving and thriving?Psycho-Oncology118992PubMedGoogle Scholar
  28. 28.
    Tomich, PL, Helgeson, VS. 2002Five years later: A cross-sectional comparison of breast cancer survivors with healthy womenPsycho-Oncology.11154169PubMedGoogle Scholar
  29. 29.
    Deimling, GT, Kahana, B, Bowman, KF, Schaefer, ML. 2002Cancer survivorship and psychological distress in later lifePsycho-Oncology11479494PubMedGoogle Scholar
  30. 30.
    Cella, DF, Tulsky, DS, Gray, G,  et al. 1993The Functional Assessment of Cancer Therapy (FACT) Scale: Development and validation of the general measureJ Clin Oncol11570PubMedGoogle Scholar
  31. 31.
    Borghede, G, Sullivan, M. 1996Measurement of quality of life in localized prostatic cancer patients treated with radiotherapy; development of a prostate cancer-specific module supplementing the EORTC QLQ-C30Qual Life Res.5212221PubMedGoogle Scholar
  32. 32.
    Osoba, D, Aaronson, N, Zee, B, Sprangers, M, te Velde, A. 1997Modification of the EORTC QLQ-C30 (version 2.0) based on content validity and reliability testing in large samples of patients with cancerQual Life Res6103108PubMedGoogle Scholar
  33. 33.
    Ringdal, GI, Ringdal, K. 1993Testing the EORTC quality of life questionnaire on cancer patients with heterogeneous diagnosesQual Life Res.2129140PubMedGoogle Scholar
  34. 34.
    Schipper, H, Clinch, J, McMurray, A, Levitt, M. 1984Measuring the quality of life of cancer patients: The functional living index-cancer: Development and validationJ Clin Oncol2472783PubMedGoogle Scholar
  35. 35.
    Schag, CAC, Heinrich, RL. 1990Development of a comprehensive quality of life measurement tool CARESOncology.4135138Google Scholar
  36. 36.
    Schag, CAC, Ganz, PA, Heinrich, RL. 1991Cancer Rehabilitation Evaluation System-Short Form CARES-SF: A cancer specific rehabilitation and quality of life instrumentCancer.6814061413PubMedGoogle Scholar
  37. 37.
    Berglund, G, Bolund, C, Fornander, T, Rutqvist, LE, Sjoden, PO. 1991Late effects of adjuvant chemotherapy and postoperative radiotherapy on quality of life among breast cancer patientsEur J Cancer .2710751081PubMedGoogle Scholar
  38. 38.
    Bjordal, K, Mastekaasa, A, Kaasa, S. 1995Self-reported satisfaction with life and physical health in long-term cancer survivors and a matched control groupEur J Cancer.31340345Google Scholar
  39. 39.
    Dow, KH, Ferrell, BR, Leigh, S, Ly, J, Gulasekaram, P. 1996An evaluation of the quality of life among long-term survivors of breast cancerBreast Cancer Res Treat39261273PubMedGoogle Scholar
  40. 40.
    Litwin, MS, Hays, RD, Fink, A,  et al. 1995Quality-of-life outcomes in men treated for localized prostate cancerJAMA.273129135PubMedGoogle Scholar
  41. 41.
    Schag, CAC, Ganz, PA, Wing, DS, Sim, MS, Lee, JJ. 1994Quality of life in adult survivors of lung, colon and prostate cancerQual Life Res.3127141PubMedGoogle Scholar
  42. 42.
    Wei, JT, Dunn, RL, Sandler, HM,  et al. 2002Comprehensive comparison of health-related quality of life after contemporary therapies for localized prostate cancerJ Clin Oncol.20557566PubMedGoogle Scholar
  43. 43.
    Wyatt, G, Friedman, LL. 1996Long-term female cancer survivors: Quality of life issues and clinical implicationsCancer Nurs.1917PubMedGoogle Scholar
  44. 44.
    Tucker MA. (1993). Secondary cancers, Cancer Principles and Practice of Oncology, 4th (ed.). 2407–2416Google Scholar
  45. 45.
    Partridge, AH, Burstein, HJ, Winer, EP. 2001Side effects of chemotherapy and combined chemohormonal therapy in women with early-stage breast cancerJ Natl Cancer Inst Mon.30135142Google Scholar
  46. 46.
    Burstein, HJ, Winer, EP. 2000Primary care for survivors of breast cancerN E J Med.34310861094Google Scholar
  47. 47.
    Wyatt, G, Kurtz, ME, Liken, M. 1993Breast cancer survivors: An exploration of quality of life issuesCancer Nurs.16440448PubMedGoogle Scholar
  48. 48.
    Cordova, MJ, Cunningham, LLC, Carlson, CR, Andrykowski, MA. 2001Posttraumatic growth following breast cancer: A controlled comparison studyHealth Psych.20176185Google Scholar
  49. 49.
    Antoni, MH, Lehman, JM, Kilbourn, KM,  et al. 2001Cognitive-behavioral stress management intervention decreases the prevalence of depression and enhances benefit finding among women under treatment for early-stage breast cancerHealth Psych .202032Google Scholar
  50. 50.
    Helgeson, VS, Snyder, P, Seltman, H. 2004Psychological and physical adjustment to breast cancer over 4 years: Identifying distinct trajectories of changeHealth Psych.23315Google Scholar
  51. 51.
    Wyatt, G, Kurtz, ME, Friedman, LL, Given, B, Given, CW. 1996Preliminary testing of the long-term quality of life instrument (LTQL) for female cancer survivorsJ Nurs Meas.4153170PubMedGoogle Scholar
  52. 52.
    Wyatt, G, Donze, LF 2003

    The Long-term quality of life instrument for female cancer survivors

    Strickland, O. eds. Measurement of Nursing Outcomes2SpringerNew York216225
    Google Scholar
  53. 53.
    Donovan, K, Sanson-Fisher, RW. 1989Redman S Measuring quality of life in cancer patientsJ Clin Oncol.7959968PubMedGoogle Scholar
  54. 54.
    Nayfield S, Hailey BJ, McCabe M. Quality of life assessment in cancer clinical trials. Report of the Workshop on Quality of Life Research in Cancer Clinical Trials, July 16–17. Bethesda, MD: US Department of Health and Human Services, 1991Google Scholar
  55. 55.
    Kessler, RC, Mroczek, DK. 1995Measuring the effects of medical interventionsMed Care.33AS109AS119PubMedGoogle Scholar
  56. 56.
    Shumaker, SA, Anderson, RT, Czajkowski, SM 1990

    Psychological tests and scales

    Spilker, B eds. Quality of Life Assessment in Clinical TrialsRaven PressNew York95113
    Google Scholar
  57. 57.
    Stewart, AL, Hays, RD, Ware, JE,Jr. 1988The MOS short-form general health survey: Reliability and validity in a patient populationMed Care.26724735PubMedGoogle Scholar
  58. 58.
    Ferrans, C. 1990Quality of life: Conceptual issuesSemin Oncol Nurs. Nov6248254Google Scholar
  59. 59.
    Padilla, GV, Presant, C, Grant, MM, Metter, G, Lipsett, J, Heide, F. 1983Quality of life index for patients with cancerRes Nurs Health.6117126PubMedGoogle Scholar
  60. 60.
    Peterman, AH, Fitchett, G, Brady, MJ, Hernandez, L, Cella’D.,  2002Measuring spiritual well-being in people with cancer The Functional assessment of chronic illness therapy-spiritual well-being scale (FACIT-Sp)Ann Behav Med.244958PubMedGoogle Scholar
  61. 61.
    Patrick, DL, Erickson, P. 1993Health Status and Health Policy: Allocating Resources to Health CareOxford PressNew York100103Google Scholar
  62. 62.
    Budescu, DV, Wallstein, TS. 1985Consistency in interpretation of probability phasesOrg Behav and Hum Dec Proc.36191205Google Scholar
  63. 63.
    Alwin, DF, Krosnick, JA. 1991The reliability of attitudinal survey measures: The role of question and respondent attributesSoc Meth and Res.20139Google Scholar
  64. 64.
    Power, M, Harper, A, Bullinger, M. 1999The World Health Organization WHOQOL-100: Tests of the universality of quality of life in 15 different cultural groups worldwideHealth Psychol.18495505PubMedGoogle Scholar
  65. 65.
    Bergner, M, Bobbitt, RA, Carter, WB, Gilson, BS. 1981The Sickness Impact Profile: Development and final revision of a health status measureMed Care.19787805PubMedGoogle Scholar
  66. 66.
    Stewart, AL, Ware, JE,Jr, Sherbourne, CD, Wells, KB 1992

    Psychological distress/well-being and cognitive functioning measures

    Stewart, ALWare, JE,Jr eds. Measuring Functioning and Well-being: The Medical Outcomes Study ApproachDuke University PressDurham102142
    Google Scholar
  67. 67.
    Tedeschi, RG, Calhoun, LG. 1996The post-traumatic growth inventory: Measuring the positive legacy of traumaJ Traumatic Stress.9455471Google Scholar
  68. 68.
    MacCallum, RC, Widaman, KF, Preacher, KJ, Hong, S. 2001Sample size in factor analysis: The role of model errorMultivariate Behav Res.36611637Google Scholar
  69. 69.
    Shrout, PE, Yager, TJ. 1989Reliability and validity of screening scales: Effect of reducing scale lengthJ Clin Epidemiol.436978Google Scholar
  70. 70.
    Nunnally, JC, Bernstein, IH. 1994Psychometric Theory3McGraw-HillNew YorkGoogle Scholar
  71. 71.
    Flesch, R. 1948A new readability yardstickJ Psychol Res.307791Google Scholar
  72. 72.
    Holzner, B, Kemmler, G, Kopp, M,  et al. 2001Quality of life in breast cancer patients – not enough attention for long-term survivors?Psychosomatics42117123PubMedGoogle Scholar
  73. 73.
    Spencer, SM, Lehman, JM, Wynings, C, Arena, PE, Carver, CS, Antoni, MH, Derhagopian, RP, Ironson, G, Love, N. 1999Concerns about breast cancer and relation to psychosocial well-being in a multiethnic sample of early stage patientsHealth Psychol.18159168PubMedGoogle Scholar
  74. 74.
    Ganz, PA, Rowland, JH, Desmond, K, Meyerowitz, BE, Wyatt, GE. 1998Life after breast cancer: Understanding women’s health-related quality of life and sexual functioningJ’Clin Oncol.16501514Google Scholar

Copyright information

© Springer 2005

Authors and Affiliations

  • Nancy E. Avis
    • 1
  • Kevin W. Smith
    • 2
  • Sarah McGraw
    • 3
  • Roselyn G. Smith
    • 3
  • Vida M. Petronis
    • 3
  • Charles S. Carver
    • 3
  1. 1.Department of Public Health Sciences, Section on Social Sciences and Health PolicyWake Forest University School of MedicineWinston-SalemUSA
  2. 2.New England Research InstitutesWatertownUSA
  3. 3.University of MiamiCoral GablesUSA

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