0
No votes yet
Evidence-Based Practice
Open Access Article

Measuring Patient-Oriented Outcomes in Palliative Care: Functionality and Quality of Life

Clara Granda-Cameron
Sara R. Viola
Mary Pat Lynch
Rosemary C. Polomano
CJON 2008, 12(1), 65-77 DOI: 10.1188/08.CJON.65-77

Outcomes measurement is necessary to evaluate quality of care, increase knowledge about experiences with cancer and therapies, and determine the effectiveness of interventions directed toward improving symptoms and quality of life (QOL) in research and clinical care. Recent attention on outcomes measurement and research in palliative care settings has emphasized the need to incorporate patient-reported outcomes. Unlike other areas of research in oncology, palliative care research is comprised largely of descriptive studies elucidating the process involved with palliative care, with a notable void in well-designed patient-oriented studies employing standard instruments for measuring functional status, QOL, symptoms, and psychosocial well-being. Outcomes programs in practice settings where palliative care is an integral part of clinical services can offer important information about patient experiences across the continuum of care and help to identify patients most likely to benefit from palliative care interventions. Therefore, oncology nurses must be informed about outcome-measurement issues, including ways to select reliable and valid instruments and determine which ones are appropriate for palliative care populations. Content related to the measurement of patient-oriented outcomes is presented to assist nurses in developing outcomes programs in palliative care settings.

References 

Addington-Hall, J.M., MacDonald, L.D., & Anderson, H.R. (1990). Can the Spitzer Quality of Life Index help to reduce prognostic uncertainty in terminal care? <i>British Journal of Cancer</i>, 62(4), 695-699.

Anderson, F., Downing, G.M., Hill, J., Casorso, L., & Lerch, N. (1996). Palliative Performance Scale (PPS): A new tool. <i>Journal of Palliative Care</i>, 12(1), 5-11.

Bjorner, J.B., Petersen, M.A., Groenvold, M., Aaronson, N., Ahlner-Elmqvist, M., Arraras, J.I., et al. (2004). Use of item response theory to develop a shortened version of the EORTC QLQ-C30 emotional functioning scale. <i>Quality of Life Research</i>, 13(10), 1683-1697.

Bradley, N., Davis, L., & Chow, E. (2005). Symptom distress in patients attending an outpatient palliative radiotherapy clinic. <i>Journal of Pain and Symptom Management</i>, 30(2), 123-131.

Bruley, D.K. (1999). Beyond reliability and validity: Analysis of selected quality-of-life instruments for use in palliative care. <i>Journal of Palliative Medicine</i>, 2(3), 299-309.

Buchanan, D.R., O'Mara, A.M., Kelaghan, J.W., & Minasian L.M. (2005). Quality-of-life assessment in the symptom management trials of the National Cancer Institute-Supported Community Clinical Oncology Program. <i>Journal of Clinical Oncology</i>, 23(3), 591-598.

Campbell, S., & Whyte, F. (1999). The quality of life of cancer patients participating in phase I clinical trials using SEIQoL-DW. <i>Journal of Advanced Nursing</i>, 30(2), 335-343.

Cella, D. (n.d.). Functional Assessment of Chronic Illness Therapy. Retrieved September 4, 2006, from <a target="_blank" href='http://www.facit.org'>http://www.facit.org</a>

Cella D. (1997). Functional Assessment of Chronic Illness Therapy (FACIT) measurement system. FACIT manual. Evanston, IL: Center on Outcomes Research and Education, Evanston Northwestern Healthcare, and Northwestern University.

Cella, D.F., Tulsky, D.S., Gray, G., Sarafian, B., Linn, E., Bonomi, A., et al. (1993). The Functional Assessment of Cancer Therapy scale: Development and validation of the general measure. <i>Journal of Clinical Oncology</i>, 11(3), 570-579.

Center to Advance Palliative Care. (n.d.). Additional resources and Websites. Retrieved January 25, 2007, from <a target="_blank" href='http://www.capc.org/research-and-references-for-palliative-care/add-reso...

Cheung, Y.B., Goh, C., Thumboo, J., Khoo, K.S., & Wee, J. (2005). Variability and sample size requirements of quality-of-life measures: A randomized study of three major questionnaires. <i>Journal of Clinical Oncology</i>, 23(22), 4936-4944.

Clancy, C.M., & Lawrence, W. (2002). Is outcomes research on cancer ready for prime time? <i>Medical Care</i>, 40(6, Suppl.), 92-100.

Cohen, S.R., Balfour, B.M., Tomas, J.J., & Mount, L.F. (1996). Existential well-being is an important determinant of quality of life: Evidence from the McGill Quality of Life Questionnaire. <i>Cancer</i>, 77(3), 576-586.

Cohen, S.R., & Mount, B.M. (2000). Living with cancer: "Good" days and "bad" days—What produces them? Can the McGill Quality of Life Questionnaire distinguish between them? <i>Cancer</i>, 89(8), 1854-1865.

Cooley, M.E., McCorkle, R., Knafl, G.J., Rimar, J., Barbieri, M.J., Davies, M., et al. (2005). Comparison of health-related quality of life questionnaires in ambulatory oncology. <i>Quality of Life Research</i>, 14(5), 1239-1249.

Deshpande, M.A., Holden, R.R., & Gilron, I. (2006). The impact of therapy on quality of life and mood in neuropathic pain: What is the effect of pain reduction? <i>Anesthesia and Analgesia</i>, 102(5), 1473-1479.

DeVellis, R.F. (1991). Scale development: Theory and applications (Applied Social Research Methods Series, vol. 26). Newbury Park, CA: Sage.

Echteld, M.A., Deliens, L., Onwuteaka-Philipsen, B., Klein, M., & van der Wal, G. (2006). EORTC QLQ-C15-PAL: The new standard in the assessment of health-related quality of life in advanced cancer? <i>Palliative Medicine</i>, 20(1), 1-2.

European Organization for Research and Treatment of Cancer. (2006). EORTC Quality of Life Questionnaires. Retrieved September 8, 2006, from <a target="_blank" href='http://www.eortc.be/home/qol/ExplQLQ-C30.htm'>http://www.eortc.be/home/q...

Francke, A.L. (2000). Evaluating research on palliative support teams: A literature review. <i>Patient Education and Counseling</i>, 41(1), 83-91.

Frank-Stromborg, M., & Olsen, S.J. (Eds.). (2004). <i>Instruments for clinical health-care research.</i> Sudbury, MA: Jones and Bartlett.

Frick, E., Borasio, G.D., Zehentner, H., Fischer, N., & Bumeder, I. (2004). Individual quality of life of patients undergoing autologous peripheral blood stem cell transplantation. <i>Psycho-Oncology</i>, 13(2), 116-124.

Fulton, C. (1999). Patients with metastatic breast cancer: Their physical and psychological rehabilitation needs. <i>International Journal of Rehabilitation Research</i>, 22(4), 291-301.

Golden-Kreutz, D.M., Thornton, L.M., Wells-Di Gregorio, S., Frierson, G.M., Jim, H.S., Carpenter, K.M., et al. (2005). Traumatic stress, perceived global stress, and life events: Prospectively predicting quality of life in breast cancer patients. <i>Health Psychology</i>, 24(3), 288-296.

Groenvold, M., Klee, M.C., Sprangers, M.A., & Aaronson, N.K. (1997). Validation of the EORTC QLQ-C30 quality of life questionnaire through combined qualitative and quantitative assessment of patient-observer agreement. <i>Journal of Clinical Epidemiology</i>, 50(4), 441-450.

Groenvold, M., Petersen, M.A., Aaronson, N.K., Arraras, J.I., Blazeby, J.M., Bottomley, A., et al. (2006a). EORTC QLQ-C15-PAL: The new standard in the assessment of health-related quality of life in advanced cancer? <i>Palliative Medicine</i>, 20(1), 59-61.

Groenvold, M., Petersen, M.A., Aaronson, N.K., Arraras, J.I., Blazeby, J.M., Bottomley, A., et al. (2006b). The development of the EORTC QLQ-C15-PAL: A shortened questionnaire for cancer patients in palliative care. <i>European Journal of Cancer</i>, 42(1), 55-64.

Harrold, J., Rickerson, E., Carroll, J.T., McGrath, J., Morales, K., Kapo, J., et al. (2005). Is the Palliative Performance Scale a useful predictor of mortality in a heterogeneous hospice population? <i>Journal of Palliative Medicine</i>, 8(3), 503-509.

Head, B., Ritchie, C.S., & Smoot, T.M. (2005). Prognostication in hospice care: Can the Palliative Performance Scale help? <i>Journal of Palliative Medicine</i>, 8(3), 492-502.

Higginson, I.J., Finlay, I., Goodwin, D.M., Cook, A.M., Hood, K., Edwards, A.G., et al. (2002). Do hospital-based palliative teams improve care for patients or families at the end of life? <i>Journal of Pain and Symptom Management</i>, 23(2), 96-106.

Hjermstad, M.J., Evensen, S.A., Kvaloy, S.O., Loge, J.H., Fayers, P.M., & Kaasa, S. (2003). The CARES-SF used for prospective assessment of health-related quality of life after stem cell transplantation. <i>Psycho-Oncology</i>, 12(8), 803-813.

Hjermstad, M.J., Fossa, S.D., Bjordal, K., & Kaasa, S. (1995). Test/retest study of the European Organization for Research and Treatment of Cancer Core Quality-of-Life Questionnaire. <i>Journal of Clinical Oncology</i>, 13(5), 1249-1254.

Hwang, S.S., Chang, V.T., Fairclough, D.L., Cogswell, J., & Kasimis B. (2003). Longitudinal quality of life in advanced cancer patients: Pilot study results from a VA medical cancer center. <i>Journal of Pain and Symptom Management</i>, 25(3), 225-235.

Hwang, S.S., Scott, C.B., Chang, V.T., Cogswell, J., Srinivas, S., & Kasimis, B. (2004). Prediction of survival for advanced cancer patients by recursive partitioning analysis: Role of Karnofsky performance status, quality of life, and symptom distress. <i>Cancer Investigation</i>, 22(5), 678-687.

Jack, B., Hillier, V., Williams, A., & Oldham, J. (2003). Hospital based palliative care teams improve the symptoms of cancer patients. <i>Palliative Medicine</i>, 17(6), 498-502.

Kaasa, S., Bjordal, K., Aaronson, N., Moum, T., Wist, E., Hagen, S., et al. (1995). The EORTC Core Quality of Life Questionnaire (QLQ-C30): Validity and reliability when analysed with patients treated with palliative radiotherapy. <i>European Journal of Cancer</i>, <b>31A</b>(13-14), 2260-2263.

Kaasa, S., & Loge, J.H. (2003). Quality of life in palliative care: Principles and practice. <i>Palliative Medicine</i>, 17(1), 11-20.

King, M.T., Dobson, A.J., & Harnett, P.R. (1996). A comparison of two quality-of-life questionnaires for cancer clinical trials: The Functional Living Index-Cancer (FLIC) and the Quality of Life Questionnaire Core Module (QLQ-C30). <i>Journal of Clinical Epidemiology</i>, 49(1), 21-29.

Kopp, M., Schweigkofler, H., Holzner B., Nachbaur, D., Niederwieser, D., Fleischhacker, W.W., et al. (2000). EORTC QLQ-C30 and FACT-BMT for the measurement of quality of life in bone marrow transplant recipients: A comparison. <i>European Journal of Haematology</i>, 65(2), 97-103.

Kuenstner, S., Langelotz, C., Budach, V., Possinger, K., Krause, B., & Sezer O. (2002). The comparability of quality of life scores: A multitrait multimethod analysis of the EORTC QLQ-C30, SF-36 and FLIC questionnaires. <i>European Journal of Cancer</i>, 38(3), 339-348.

Lau, F., Downing, G.M., Lesperance, M., Shaw, J., & Kuziemsky, C. (2006). Use of Palliative Performance Scale in end-of-life prognostication. <i>Journal of Palliative Medicine</i>, 9(5), 1066-1075.

Lhussier, M., Watson, B., Reed, J., & Clarke, C.L. (2005). The SEIQoL and functional status: How do they relate? <i>Scandinavian Journal of Caring Sciences</i>, 19(4), 403-409.

Lipscomb, J., & Snyder, C.F. (2002). The outcomes of cancer outcomes research: Focusing on the National Cancer Institute's quality-of-care initiative. <i>Medical Care</i>, 40(6, Suppl.), 3-10.

Macduff, C. (2000). Respondent-generated quality of life measures: Useful tools for nursing or more fool's gold? <i>Journal of Advanced Nursing</i>, 32(2), 375-382.

Maltoni, M., & Amadori, D. (2002). Prognosis in advanced cancer. <i>Hematology/Oncology Clinics of North America</i>, 16(3), 715-729.

Mor, V., Laliberte, L., Morris, J.N., & Wiemann, M. (1984). The Karnofsky Performance Status Scale. An examination of its reliability and validity in a research setting. <i>Cancer</i>, 53(9), 2002-2007.

Morrison, R.S., Maroney-Galin, C., Kralovec, P.D., & Meier, D.E. (2005). The growth of palliative care programs in United States hospitals. <i>Journal of Palliative Medicine</i>, 8(6), 1127-1134.

National Institutes of Health State-of-the-Science Conference Statement. Improving end-of-life care. (December 6-8, 2004). <i>Journal of Pain and Palliative Care Pharmacotherapy</i>, 19(3), 75-83.

National Palliative Care Research Center. (2007). Retrieved January 25, 2007, from <a target="_blank" href='http://www.npcrc.org/about/about_show.htm?doc_id=374963'>http://www.npcr...

Niezgoda, H.E., & Pater, J.L. (1993). A validation study of the domains of the core EORTC quality of life questionnaire. <i>Quality of Life Research</i>, 2(5), 319-325.

Nunnally, J.C., & Bernstein, I. (1994). <i>Psychometric theory</i> (3rd ed). New York: McGraw Hill.

O'Boyle, C.A., & Waldron, D. (1997). Quality of life issues in palliative medicine. <i>Journal of Neurology</i>, 244(Suppl. 4), S18-S25.

Patrick, D.L., Ferketich, S.L., Frame, P.S., Harris, J.J., Hendricks, C.B., Levin, B., et al. (2003). National Institutes of Health State-of-the-Science Conference Statement: Symptom management in cancer: Pain, depression, and fatigue. <i>Journal of the National Cancer Institute</i>, 95(15), 1110-1117.

Perez, D.J., McGee, R., Campbell, A.V., Christensen, E.A., & Williams, S. (1997). A comparison of time trade-off and quality of life measures in patients with advanced cancer. <i>Quality of Life Research</i>, 6(2), 133-138.

Polit, D.E., & Beck, C.T. (2007). Assessing measurement quality in quantitative studies. In <i>Nursing research: Generating and assessing evidence for nursing practice</i> (8th ed., pp. 449-473). Philadelphia: Lippincott Williams and Wilkins.

Pratheepawanit, N., Salek, M.S., & Finlay, I.G. (1999). The applicability of quality-of-life assessment in palliative care: Comparing two quality-of-life measures. <i>Palliative Medicine</i>, 13(4), 325-334.

Radbruch, L., Sabatowski, R., Loick, G., Jonen-Thielemann, I., Kasper, M., Gondek, B., et al. (2000). Cognitive impairment and its influence on pain and symptom assessment in a palliative care unit: Development of a Minimal Documentation System. <i>Palliative Medicine</i>, 14(4), 266-276.

Schag, C.A., Ganz, P.A., & Heinrich, R.L. (1991). Cancer Rehabilitation Evaluation System-Short Form (CARES-SF). A cancer specific rehabilitation and quality of life instrument. <i>Cancer</i>, 68(6), 1406-1413.

Schag, C.A., Heinrich, R.L., Aadland, R.L., & Ganz, P.A. (1990). Assessing problems of cancer patients: Psychometric properties of the Cancer Inventory of Problem Situations. <i>Health Psychology</i>, 9(1), 83-102.

Schag, C.A., Heinrich, R.L., & Ganz, P.A. (1983). The Cancer Inventory of Problem Situations: An instrument for assessing cancer patients' rehabilitation needs. <i>Journal of Psychosocial Oncology</i>, 1(4), 11-24.

Schag, C.C., Heinrich, R.L., & Ganz, P.A. (1984). Karnofsky performance status revisited: Reliability, validity, and guidelines. <i>Journal of Clinical Oncology</i>, 2(3), 187-193.

Schipper, H., Clinch, J., McMurray, A., & Levitt, M. (1984). Measuring the quality of life of cancer patients: The Functional Living Index-Cancer: Development and validation. <i>Journal of Clinical Oncology</i>, 2(5), 472-483.

Spitzer, W.O., Dobson, A.J., Hall, J., Chesterman, E., Levi, J., Shepherd, R., et al. (1981). Measuring the quality of life of cancer patients: A concise QL-index for use by physicians. <i>Journal of Chronic Diseases</i>, 34(12), 585-597.

Stanley, K.E. (1980). Prognostic factors for survival in patients with inoperable lung cancer. <i>Journal of the National Cancer Institute</i>, 65(1), 25-32.

Stewart, A.L., Hays, R.D., & Ware, J.E., Jr. (1988). The MOS shortform general health survey: Reliability and validity in a patient population. <i>Medical Care</i>, 26(7), 724-735.

Victoria Hospice. (2001). Palliative Performance Scale (PPSv2) version 2. Retrieved January 25, 2007, from <a target="_blank" href='http://www.victoriahospice.org/Revised%20PPSv2%20ScaleJuly06.pdf'>http:/...

Waldron, D., O'Boyle, C.A., Kearney, M., Moriarty, M., & Carney, D. (1999). Quality-of-life in advanced cancer: Assessing the individual. <i>Journal of Clinical Oncology</i>, 17(11), 3603-3611.

Waltz, C. F., Strickland, O. L., & Lenz, E. R. (Eds.). 2003. <i>Measurement in nursing and health research</i> (3rd ed.). New York: Springer.

Ware, J.E., Kosinski, M., & Keller, S.D. (1994). <i>SF-36 Physical and mental health summary scales: A user's manual.</i> Boston: Health Assessment Lab.

Ware, J.E., Snow, K.K., & Kosinski, M. (2000). <i>SF-36 health survey: Manual and interpretation guide.</i> Lincoln, RI: Quality Metric Incorporated.

Ware, J.E., Jr., & Sherbourne, C.D. (1992). The MOS 36-Item Short-Form Health Survey (SF-36). I. Conceptual framework and item selection. <i>Medical Care</i>, 30(6), 473-483.

Willener, R., & Hantikainen, V. (2005). Individual quality of life following radical prostatectomy in men with prostate cancer. <i>Urologic Nursing</i>, 25(2), 88-90, 95-100.

Wilson, R.W., Hutson, L.M., & VanStry, D. (2005). Comparison of 2 quality-of-life questionnaires in women treated for breast cancer: The RAND 36-item Health Survey and the Functional Living Index-Cancer. <i>Physical Therapy</i>, 85(9), 851-860.

World Health Organization. (2002). <i>Cancer pain relief and palliative care.</i> Geneva, Switzerland: Author.