Skip to main content Accessibility help

We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.

Close cookie message
×
Hostname: page-component-76fb5796d-zzh7m Total loading time: 0 Render date: 2024-04-25T15:11:09.823Z Has data issue: false hasContentIssue false

2 - Definitions and conceptual models of quality of life

Published online by Cambridge University Press:  18 December 2009

By
Carol Estwing Ferrans Ph.D., R.N., F.A.A.N.
Edited by
Joseph Lipscomb ,
Carolyn C. Gotay  and
Claire Snyder
Carol Estwing Ferrans Ph.D., R.N., F.A.A.N.
Affiliation:
Professor University of Illinois at Chicago, Chicago, IL
Joseph Lipscomb
Affiliation:
National Cancer Institute, Bethesda, Maryland
Carolyn C. Gotay
Affiliation:
Cancer Research Center, Hawaii
Claire Snyder
Affiliation:
National Cancer Institute, Bethesda, Maryland
Get access

Summary

Over the past 30 years, quality of life has evolved into a respected construct for evaluating the effectiveness of treatment in health care. The field has grown in methodological rigor and in the sophistication of instrument development. Researchers in oncology have been at the forefront in the evaluation of quality of life, recognizing the need to assess outcomes more broadly than tumor response and length of survival. In 1985, quality of life was identified as a key parameter of efficacy to be used for approval of new anticancer drugs for advanced metastatic disease in the USA. In 1988, the Division of Cancer Treatment (CTEP) of the National Cancer Institute (USA) identified improving quality of life as one of its highest priorities. Quality-of-life endpoints are integral components of cancer clinical trials throughout the world, and are required for all phase III clinical trials by the National Cancer Institute of Canada Clinical Trials Group.

But what is quality of life? The literature contains a bewildering array of characterizations. The term “quality of life” is commonly used to mean health status, physical functioning, symptoms, psychosocial adjustment, well-being, life satisfaction, or happiness. Introducing the term “health-related quality of life” has not solved the problem. Because the terms have meaning in everyday language, they are frequently used without explicit definition. At the heart of the problem is the very nature of the idea of quality of life, which is uniquely personal in its essence.

Type
Chapter
Information
Outcomes Assessment in Cancer
Measures, Methods and Applications
 , pp. 14 - 30
Publisher: Cambridge University Press
Print publication year: 2004

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Johnson, J. R., Temple, R. (1985). Food and Drug Administration requirements for approval of new anticancer drugsCancer Treatment Reports 69:1155–7Google ScholarPubMed
National Cancer Institute (1988). Clinical Trials Cooperative Group Program, Cancer Therapy Evaluation Program: Guidelines. Bethesda, MD, Division of Cancer Treatment, National Cancer Institute, February 29, 1988. Cited in: Varricchio, C. (1990). Relevance of quality of life to clinical nursing practice. Seminars in Oncology Nursing6:255–9
Osoba, D. (1992). The quality of life committee of the clinical trials group of the National Cancer Institute of Canada: Organization and functionsQuality of Life Research 1:211–8CrossRefGoogle Scholar
Spilker, B., Revicki, D. (1996). Taxonomy of quality of life. In Quality of Life and Pharmacoeconomics in Clinical Trials (2nd Edition), ed. B. Spilker, pp. 25–31. Philadelphia, PA: Lippincott-Raven Publishers
Guyatt, G. H., Feeny, D. H., Patrick, D. L. (1993). Measuring health-related quality of lifeAnnals of Internal Medicine 118:622–8CrossRefGoogle ScholarPubMed
World Health Organization (1958). The First Ten Years of the World Health Organization. Geneva: World Health Organization
Spilker, B. (1996). Introduction. In Quality of Life and Pharmacoeconomics in Clinical Trials (2nd Edition), ed. B. Spilker, pp. 1–10. Philadelphia, PA: Lippincott-Raven Publishers
Aaronson, N., Ahmedzai, S., Bergman, B.et al. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A quality of life instrument for use in international clinical trials in oncologyJournal of the National Cancer Institute 85:365–76CrossRefGoogle Scholar
Shag, C., Ganz, P. A., Heinrich, R. (1991). Cancer Rehabilitation Evaluation System — Short Form (CARES-SF)Cancer 68:1406–133.0.CO;2-2>CrossRefGoogle Scholar
Cohen, S., Mount, B., Strobel, M.et al. (1995). The McGill Quality of Life Questionnaire: A measure of quality of life appropriate for people with advanced diseasePalliative Medicine 9:207–19CrossRefGoogle ScholarPubMed
Leplege, A., Hunt, S. (1997). The problem of quality of life in medicineJournal of the American Medical Association 278:47–50CrossRefGoogle Scholar
Padilla, G., Ferrell, B., Grant, M.et al. (1990). Defining the content domain of quality of life for cancer patients with painCancer Nursing 13:108–15CrossRefGoogle ScholarPubMed
Grant, M., Ferrell, B., Schmidt, G.et al. (1992). Measurement of quality of life in bone marrow transplantation survivorsQuality of Life Research 1:375–84CrossRefGoogle ScholarPubMed
Ferrans, C., Powers, M. (1985). Quality of Life Index: development and psychometric propertiesAdvances in Nursing Science 8:15–24CrossRefGoogle ScholarPubMed
Ferrans, C. E. (1990). Development of a quality of life index for patients with cancerOncology Nursing Forum 17:15–19Google ScholarPubMed
Ferrans, C., Powers, M. (1992). Psychometric assessment of the Quality of Life IndexResearch in Nursing and Health 15:29–38CrossRefGoogle ScholarPubMed
Ferrell, B. R. (1996). The quality of lives: 1,525 voices of cancerOncology Nursing Forum 26:907–16Google Scholar
Ferrell, B., Wisdom, C., Wenzl, C. (1989). QOL as an outcome variable in the management of cancer painCancer 63:2321–73.0.CO;2-T>CrossRefGoogle Scholar
Ferrell, B., Grant, M., Padilla, G. (1991). Experience of pain and perceptions of quality of life: Validation of a conceptual modelHospice Journal 7:9–24CrossRefGoogle ScholarPubMed
Ferrell, B., Grant, M., Schmidt, G.et al. (1992). The meaning of quality of life for bone marrow transplant survivors. Part 1: The impact of bone marrow transplant on QOLCancer Nursing 15:153–60Google Scholar
Ferrell, B., Dow, K., Leigh, S.et al. (1995). Quality of life in long term cancer survivorsOncology Nursing Forum 22:915–22Google ScholarPubMed
Ferrans, C. (1996). Development of a conceptual model of quality of lifeScholarly Inquiry for Nursing Practice: An International Journal 10:293–304Google ScholarPubMed
Ferrans, C. (1994). Quality of life through the eyes of survivors of breast cancerOncology Nursing Forum 21:1645–51Google ScholarPubMed
Ferrans, C., Powers, M. (1993). Quality of life of hemodialysis patientsAmerican Nephrology Nurses Association Journal 20:575–81Google ScholarPubMed
Ferrans, C., Cohen, F., Smith, K. (1992). Quality of life of persons with narcolepsyGrief, Loss, and Care 5:23–32Google Scholar
Warnecke, R., Ferrans, C., Johnson, T.et al. (1996). Measuring quality of life in culturally diverse populationsJournal of the National Cancer Institute Monographs 20:29–38Google Scholar
Anderson, J., Ferrans, C. (1997). The quality of life of persons with chronic fatigue syndromeJournal of Nervous and Mental Disease 106:359–67CrossRefGoogle Scholar
Arzouman, J., Dudas, S., Ferrans, C.et al. (1991). Quality of life of patients with sarcoma post-chemotherapyOncology Nursing Forum 18:889–94Google Scholar
Belec, R. (1992). Quality of life: Perceptions of long-term survivors of bone marrow transplantationOncology Nursing Forum 19:31–7Google ScholarPubMed
Aaronson, N. K., Cull, A. M., Kaasa, S. et al. (1996). The European Organization for Research and Treatment of Cancer (EORTC) modular approach for quality of life assessment in oncology: An update. In Quality of Life and Pharmacoeconomics in Clinical Trials (2nd Edition), ed. B. Spilker, pp. 179–89. Philadelphia: Lippincott-Raven
Cella, D., Tulsky, D., Gray, G.et al. (1993). The Functional Assessment of Cancer Therapy (FACT) Scale: Development and validation of the general versionJournal of Clinical Oncology 11:570–9CrossRefGoogle Scholar
Cella, D., Bonomi, A., Lloyd, S.et al. (1995). Reliability and validity of the Functional Assessment of Cancer Therapy-Lung (FACT-L) quality of life instrumentLung Cancer 12:199–220CrossRefGoogle ScholarPubMed
Osoba, D. (1994). Lessons learned from measuring health-related quality of life in oncologyJournal of Clinical Oncology 12:608–16CrossRefGoogle Scholar
Ganz, Goodwin, this volume, Chapter 5
Gotay, C. C. (1996). Trial-related quality of life: using quality-of-life assessment to distinguish among cancer therapiesJournal of the National Cancer Institute Monographs 20:1–6Google Scholar
Chang, C., Cella, D. (1997). Equating health-related quality of life instruments in applied oncology settingsPhysical Medicine and Rehabilitation 11:397–406Google Scholar
Weitzner, M., Meyers, C., Byrne, K. (1996). Psychosocial functioning and quality of life in patients with primary brain tumorsJournal of Neurosurgery 84:29–34CrossRefGoogle ScholarPubMed
Fobair, P., Hoppe, R. T., Bloom, J.et al. (1986). Psychosocial problems among survivors of Hodgkin's diseaseJournal of Clinical Oncology 4:805–14CrossRefGoogle ScholarPubMed
Kornblith, A. B., Anderson, J., Cella, D. F.et al. (1992). Hodgkin's disease survivors at increased risk for problems in psychosocial adaptationCancer 70:2214–243.0.CO;2-X>CrossRefGoogle ScholarPubMed
Schipper, H., Clinch, J., Olweny, C. (1996). Quality of life studies: Definitions and conceptual issues. In Quality of Life and Pharmacoeconomics in Clinical Trials (2nd Edition), ed. B. Spilker, pp. 11–23. Philadelphia, PA: Lippincott-Raven Publishers
Rhodes, V. A., McDaniel, R. W. (1997). Measuring nausea, vomiting, and retching. In Instruments for Clinical Health-Care Research, ed. M. Frank-Stromborg and S. J. Olsen, pp. 509–18. Sudbury, MA: Jones and Bartlett
Dougherty, C., Dewhurst, T., Nichol, P.et al. (1998). Comparison of three quality of life instruments in stable angina pectoris: Seattle Angina Questionnaire, Short Form Health Survey (SF-36), and Quality of Life Index — Cardiac Version IIIJournal of Clinical Epidemiology 51:569–75CrossRefGoogle Scholar
Schlenk, E., Erlen, J., Dunbar-Jacob, J.et al. (1998). Health-related quality of life in chronic disorders: a comparison across studies using the MOS SF-36Quality of Life Research 7:57–65CrossRefGoogle ScholarPubMed
Campbell, A., Converse, P. E., Rodgers, W. L. (1976). The Quality of American Life: Perceptions, Evaluations, and Satisfactions. New York: Russell Sage
Day, H. and Jankey, S. G. (1996). Lessons from the literature: toward a holistic model of quality of life In Quality of Life in Health Promotion and Rehabilitation: Conceptual Approaches, Issues, and Applications, pp. 39–50. Thousand Oaks, CA: SageGoogle Scholar
Frisch, M. B. (1998). Quality of life therapy and assessment in health careClinical Psychology Science and Practice 5:19–40CrossRefGoogle Scholar
Selby, P. (1993). Measurement of quality of life in cancer patientsJournal of Pharmacy & Pharmacology 45 (Suppl. 1):384–6Google ScholarPubMed
Zissi, A., Barry, M. M., Cochrane, R. A. (1998). A mediational model of quality of life for individuals with severe mental health problemsPsychological Medicine 28:1221–30CrossRefGoogle ScholarPubMed
Diener, E., Suh, E. M., Lucas, R. E.et al. (1999). Subjective well-being: three decades of progressPsychological Bulletin 125:276–302CrossRefGoogle Scholar
Sprangers, M. A. G., Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: a theoretical modelSocial Science and Medicine 48:1507–15CrossRefGoogle ScholarPubMed
Feeny, this volume, Chapter 4
Frisch, M. B. (1993). The Quality of Life Inventory: a cognitive-behavioral tool for complete problem assessment, treatment planning, and outcome evaluationBehavior Therapy 16:42–4Google Scholar
Litwin, M. (1994). Measuring health related quality of life in men with prostate cancerJournal of Urology 152:1882–7CrossRefGoogle ScholarPubMed
Gill, T., Feinstein, A. (1994). A critical appraisal of the quality of quality-of-life measurementsJournal of the American Medical Association 272:619–26CrossRefGoogle ScholarPubMed
Felce, D., Perry, J. (1995). Quality of life: its definition and measurementResearch in Developmental Disabilities 16:51–74CrossRefGoogle Scholar
Bloom, J. R. (1984). Response to J. E. Ware, Jr., Conceptualizing disease impact and treatment outcomesCancer 53 (Suppl.):2323–6CrossRefGoogle Scholar
Covinsky, K. E., Wu, A. W., Landefeld, S.et al. (1999). Health status versus quality of life in older patients: does the distinction matter?American Journal of Medicine 106:435–40CrossRefGoogle ScholarPubMed
Patrick, D. L., Kinne, S., Engleberg, R. A.et al. (2000). Functional status and perceived quality of life in adults with and without chronic conditionsJournal of Clinical Epidemiology 53:779–85CrossRefGoogle ScholarPubMed
Barofsky, I. (2003). Patient's rights, quality of life, and health care system performanceQuality of Life Research 12:473–84CrossRefGoogle ScholarPubMed
Osoba, this volume, Chapter 19
Barofsky, I. (1996). Cancer: psychosocial aspects. In Quality of Life and Pharmacoeconomics in Clinical Trials (2nd Edition), ed. B. Spilker, pp. 993–1002. Philadelphia, PA: Lippincott-Raven
Ware, J. E. Jr., (1984). Conceptualizing disease impact and treatment outcomesCancer 53 (Suppl.):2316–23CrossRefGoogle ScholarPubMed
Wilson, I. B., Cleary, P. D. (1995). Linking clinical variables with health-related quality of life: a conceptual model of patient outcomesJournal of the American Medical Association 273:59–65CrossRefGoogle ScholarPubMed
Patrick, D. L., Chiang, Y. P. (2000). Measurement of health outcomes in treatment effectiveness evaluations: conceptual and methodological challengesMedical Care 38 (Suppl. II):14–25CrossRefGoogle ScholarPubMed
Smith, K. W., Avid, N. E., Assmann, S. F. (1999). Distinguishing between quality of life and health status in quality of life research: a meta-analysisQuality of Life Research 8:447–59CrossRefGoogle ScholarPubMed
Fayers, P. M., Hand, D. J., Bjordal, K.et al. (1997). Causal indicators in quality of life researchQuality of Life Research 6:393–406CrossRefGoogle ScholarPubMed
Fayers, P. M., Hand, D. J. (2002). Causal variables, indicator variables, and measurement scales: an example from quality of lifeJournal of the Royal Statistical Society 165 (Part 2):1–21Google Scholar
Schipper, H., Clinch, J., McMurray, A.et al. (1984). Measuring the quality of life of cancer patients: the Functional Living Index — Cancer: Development and validationJournal of Clinical Oncology 2:472–83CrossRefGoogle ScholarPubMed
Morrow, G., Lindke, J., Black, P.et al. (1992). Measurement of quality of life in patients: psychometric analysis of the Functional Living Index-Cancer (FLIC)Quality of Life Research 1:287–96CrossRefGoogle Scholar
Clinch, J. (1996). The Functional Living Index-Cancer: ten years later. In Quality of Life and Pharmacoeconomics in Clinical Trials (2nd Edition), ed. B. Spilker, pp. 215–25. Philadelphia, PA: Lippincott-Raven Publishers
Ware, J. E. Jr., Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36)Medical Care 30:473–83CrossRefGoogle Scholar
Stewart, A. L., Hays, R. D., Ware, J. E. (1988). The MOS short-form general health surveyMedical Care 26:724–35CrossRefGoogle ScholarPubMed
Spitzer, W., Dobson, A., Hall, J.et al. (1981). Measuring the quality of life of cancer patients: a concise QL-Index for use by physiciansJournal of Chronic Disease 34:585–97CrossRefGoogle ScholarPubMed
Cella, D. (1995). Measuring quality of life in palliative careSeminars in Oncology 22:73–81Google ScholarPubMed
Ebrahim, S. (1995). Clinical and public health perspectives and applications of health-related quality of life measurementSocial Science and Medicine 41:1383–94CrossRefGoogle ScholarPubMed
Revicki, D., Osoba, D., Fairclough, D.et al. (2000). Recommendations on health-related quality of life research to support labeling and promotional claims in the United StatesQuality of Life Research 9:887–900CrossRefGoogle ScholarPubMed
Padilla, G. V., Grant, M. M., Ferrell, B. R. et al. (1996). Quality of Life — Cancer. In Quality of Life and Pharmacoeconomics in Clinical Trials (2nd Edition), ed. B. Spilker, pp. 301–8. Philadelphia, PA: Lippincott-Raven
Calman, K. C. (1987). Definitions and dimensions of quality of life. In The Quality of Life of Cancer Patients, ed. N. K. Aaronson and J. H. Beckmann, pp. 1–9. New York: Raven Press
Felce, D., Perry, J. (1996). Quality of Life in Health Promotion and Rehabilitation: Conceptual Approaches, Issues, and Applications. Thousand Oaks, CA: Sage
Patrick, D. L., Erickson, P. (1993). Health Status and Health Policy: Allocating Resources to Health Care. Oxford: Oxford University Press
Gotay, C., Korn, E., McCabe, M.et al. (1992). Quality-of-life assessment in cancer treatment protocols: Research issues in protocol developmentJournal of the National Cancer Institute 84:575–9CrossRefGoogle ScholarPubMed
Roy, D. J. (1992). Measurement in the service of compassionJournal of Palliative Care 8:3–4Google ScholarPubMed
World Health Organization (1995). The World Health Organization Quality of Life Assessment (WHOQOL): Position paper from the World Health OrganizationSocial Science and Medicine 41:1403–9CrossRef
Karnofsky, D., Abelman, W., Craver, L. F.et al. (1948). The use of nitrogen mustards in the palliative treatment of carcinoma with particular reference to bronchogenic carcinomaCancer 1:634–563.0.CO;2-L>CrossRefGoogle Scholar
Gelber, R., Goldhirsch, A., Cavelli, F. (1991). Quality-of-life-adjusted evaluation of adjuvant therapies for operable breast cancerAnnals of Internal Medicine 114:621–8CrossRefGoogle ScholarPubMed

Save book to Kindle

To save this book to your Kindle, first ensure coreplatform@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×