Kurland, G. (2003). Setting the stage: putting our mission into perspective. In Quality of Life III: Translating the Science of QOL Assessment into Clinical Practice. Scottsdale, AZ: Mayo School of Continuing Medical EducationGoogle Scholar

Wilson, I. B. and Cleary, P. D. (1995). Linking clinical variables with health-related quality of life: a conceptual model of patient outcomes. J.A.M.A., 273, 59–65CrossRefGoogle ScholarPubMed

Cella, D. and Cherin, E. A. (1988). Quality of life during and after cancer treatment. Comp. Ther., 14, 69–75Google ScholarPubMed

Public Health Service National Institutes of Health (1990). Quality of Life Assessment in Cancer Clinical Trials. Bethesda, MD: US Department of Health and Human Services

Cella, D. R., Tulsky, D. S., Gray, G.et al. (1993). The Functional Assessment of Cancer Therapy Scale; development and validation of the general measure. J. Clin. Oncol., 11, 570–9CrossRefGoogle ScholarPubMed

Jacobsen, P. B. and Weitzner, M. A. (1999). Evaluation of palliative endpoints in oncology clinical trials. Cancer Control, 6, 471–7CrossRefGoogle ScholarPubMed

Ferrell, B. R. (1996). The quality of lives: 1525 voices of cancer. Oncol. Nursing Forum, 23, 909–16Google Scholar

Ferrell, B. R. (1993). To know suffering. Oncol. Nursing Forum, 20, 1471–7Google ScholarPubMed

Dow, K. H., Ferrell, B. R., Haberman, M. R., and Eaton, L. (1999). The meaning of quality of life in cancer survivorship. Oncol. Nursing Forum, 26, 519–28Google ScholarPubMed

Greenberg, P. L., Cox, C., Beau, M. M.et al. (1997). International scoring system for evaluating prognosis in myelodysplastic syndromes. Blood, 89, 2079–88Google ScholarPubMed

Guyatt, G., Ferrans, C., Halyard, M.et al. (2003). Value of HRQOL to clinicians from clinical research and in clinical practice. In Quality of Life III: Translating the Science of QOL Assessment into Clinical Practice. Scottsdale, AZ: Mayo School of Continuing Medical EducationGoogle Scholar

Sprangers, M. and Schwartz, C. (2000). Integrating response shift into health-related quality of life research: a theoretical model. In Adaptation to Changing Health: Response Shift in Quality-of-Life Research, ed. , C. Schwartz and , M. Spangers. Washington, DC: American Psychological Association, pp. 11–23Google Scholar

Wilson, I. B. (2000). Clinical understanding and implications. In Adaptation to Changing Health: Response Shift in Quality of Life Research, ed. , C. Schwartz and , M. Spangers. Washington, DC: American Psychological Association, pp. 73–77Google Scholar

Wagner, E. D., Austin, B. T., and VonKorf, M. (1996). Improving outcomes in chronic illness. Managed Care Q., 4, 12–25Google ScholarPubMed

American Society of Clinical Oncology Committee. (1996). Outcomes of cancer treatment for technology assessment and cancer treatment guidelines. J. Clin. Oncol., 14, 671–9CrossRef

Kattan, M. W. (2003). Comparing treatment outcomes using utility assessment for health-related quality of life. Oncology, 17, 1687–93Google ScholarPubMed

Cella, D. and Dobrez, D. (2003). The Kattan article reviewed. Oncology, 17, 1697–1701Google Scholar

Weeks, J. C., Cook, E. F., O'Day, S. J.et al. (1998). Relationship between cancer patients' prediction of prognosis and their treatment preferences. J.A.M.A., 279, 1709–14CrossRefGoogle Scholar

Bennett, K. J. and Torrance, G. W. (1996). Measuring health state preferences and utilities: rating scale, time trade-off, and standard gamble techniques. In Quality of Life and Pharmacoeconomics in Clinical Trials, ed. , B. Spilker. Philadelphia: Lippincott-Raven, pp. 253–65Google Scholar

Ross, P. L., Littenberg, B., Fearn, P.et al. (2003). Paper standard gamble: a paper-based measure of standard gamble utility for current health. Int. J. Technol. Assess. Health Care, 19, 135–47CrossRefGoogle ScholarPubMed

Torrance, G. W. (1987). Utility approach to measuring health-related quality of life. J. Chron. Dis., 40, 593–603CrossRefGoogle ScholarPubMed

Sprangers, M., Moinpour, C., Moynihan, T.et al. (2002). Assessing meaningful change in quality of life over time: a user's guide for clinicians. Mayo Clin. Proc., 77, 561–71CrossRefGoogle Scholar

Ferrell, B. R., Grant, M., Dean, G. E., Funk, B., and Ly, J. (1996). “Bone tired”: the experience of fatigue and its impact on quality of life. Oncol. Nursing Forum, 23, 1539–47Google Scholar

Thomas, M. L. (2001). Quality of life in myelodysplastic syndromes: measurement issues in research and clinical practice. Leuk. Res., 25, S11Google Scholar

NCCN (2004). NCCN Practice Guidelines in Oncology V. Myelodysplastic Syndromes. Available online at: www.NCCN.org

Cella, D., Chassany, O., Fairclough, D.et al. (2003). A guide for clinicians to compare the precision of health-related quality of life data relative to other measures. In Quality of Life III: Translating the Science of QOL Assessment into Clinical Practice. Scottsdale, AZ: Mayo School of Continuing EducationGoogle Scholar

Sloan, J. A., Cella, D., Frost, M. H.et al. (2002). Assessing clinical significance in measuring oncology patient quality of life: introduction to the symposium, content overview, and definition of terms. Mayo Clin. Proc., 77, 367–70CrossRefGoogle ScholarPubMed

Guyatt, G., Osoba, D., Wu, A.et al. (2002). Methods to explain the clinical significance of health status measures. Mayo Clin. Proc., 77, 371–83CrossRefGoogle ScholarPubMed

Cella, D., Bullinger, M., Scott, C.et al. (2002). Group vs individual approaches to understanding the clinical significance of differences or changes in quality of life. Mayo Clin. Proc., 77, 384–92CrossRefGoogle ScholarPubMed

Thomas, M. L. (2002). Quality of life in individuals with MDS: impact of fatigue. In 7th International Symposium on Myelodysplastic Syndromes. Paris, France

Thomas, M. L. (1998). Quality of life and psychosocial adjustment in patients with myelodysplastic syndromes. Leuk. Res., 22, S41–7CrossRefGoogle ScholarPubMed

Glaus, A. (1998). Fatigue in patients with cancer: analysis and assessment. Rec. Results Cancer Res., 145, 1–168CrossRefGoogle ScholarPubMed

Winningham, M. L. (2000). The puzzle of fatigue: how do you nail pudding to the wall? In Fatigue in Cancer: A Multidimensional Approach, ed. , M. L. Winningham and , M. Barton-Burke. Sudbury, MA: Jones and Bartlett, pp. 3–29Google Scholar

Sobrero, A., Puglisi, F., Guglielmi, A.et al. (2001). Fatigue: a main component of anemia symptomatology. Semin. Oncol., 28 (suppl. 8), 15–18CrossRefGoogle ScholarPubMed

Ream, E. and Richardson, A. (1997). Fatigue in patients with cancer and chronic obstructive airways disease: a phenomenological inquiry. Int. J. Nursing Studies, 34, 44–53CrossRefGoogle Scholar

Glaus, A. (1993). Assessment of fatigue in cancer and non-cancer patients. Support. Care Cancer, 1, 305–15CrossRefGoogle ScholarPubMed

Winningham, M. L. (2000). The foundations of energetics: fatigue, fuel, and functioning. In Fatigue in Cancer: A Multidimensional Approach, ed. , M. L. Winningham and , M. Barton-Burke. Sudbury, MA: Jones and Bartlett, pp. 31–53Google Scholar

Winningham, M. L. and Barton-Burke, M. (2000). Fatigue in Cancer: A Multidimensional Approach. Sudbury, MA: Jones and BartlettGoogle Scholar

Gilbert, M. (2003). A survivor's journey: one woman's experience with cancer-related fatigue. Support. Care Cancer, 10, 389–98Google Scholar

Winningham, M. L. and Bookbinder, M. (2000). Assessing manifestations: quality of life from a quality improvement perspective. In Fatigue in Cancer: A Multidimensional Approach, ed. , M. L. Winningham and , M. Barton-Burke M.Sudbury, MA: Jones and Bartlett, pp. 279–93Google Scholar

NCCN (2003). Supportive care practice guidelines: cancer-related fatigue. In National Comprehensive Cancer Network. Available online at: www.nccn.org/professionals/physician_glsPDF/fatigue.pdf

Gleeson, C. and Spencer, D. (1995). Blood transfusion and its benefits in palliative care. Palliative Med., 9, 307–13CrossRefGoogle ScholarPubMed

Jansen, A. J., Essink-Bot, M. L., Beckers, A. M.et al. (2003). Quality of life measurement in patients with transfusion-dependent myelodysplastic syndromes. Br. J. Hematol., 121, 270–4CrossRefGoogle ScholarPubMed

Jones, M., Ibels, L., Schenkel, B., and Zagari, M. (2004). Impact of epoetin alfa on clinical end points in patients with chronic renal failure: a meta-analysis. Kidney Int., 65, 757–67CrossRefGoogle ScholarPubMed

Shasha, D., George, M. J., and Harrison, L. B. (2003). Once-weekly dosing of epoetin-alpha increases hemoglobin and improves quality of life in anemic cancer patients receiving radiation therapy either concomitantly or sequentially with chemotherapy. Cancer, 98, 1072–9CrossRefGoogle ScholarPubMed

Littlewood, J. L., Nortier, J., Rapoport, B.et al. (2003). Epoetin alfa corrects anemia and improves quality of life in patients with hematologic malignancies receiving non-platinum chemotherapy. Hematol. Oncol., 21, 169–80CrossRefGoogle ScholarPubMed

Ross, S. D., Fahrbach, K., Frame, D.et al. (2003). The effects of anemia treatment on selected health-related quality-of-life domains: a systematic review. Clin. Ther., 25, 1786–805CrossRefGoogle ScholarPubMed

Quirt, I., Roveson, C., Lau, C.et al. (2001). Epoetin alfa therapy increases hemoglobin levels and improves quality of life in patients with cancer-related anemia who are not receiving chemotherapy and patients with anemia who are receiving chemotherapy. J. Clin. Oncol., 19, 4126–34CrossRefGoogle Scholar

Hickie, I., Lloyd, A., Wakefield, D., and Ricci, C. (1996). Is there a postinfection fatigue syndrome?Aust. Family Phys., 25, 1847–52Google Scholar

Cohen, H. J. (1994). Biology of aging as related to cancer. Cancer, 74, 2092–1003.0.CO;2-G>CrossRefGoogle Scholar

Jones, E. A, Bolyard, A. A., and Dale, D. C. (1993). Quality of life with severe chronic neutropenia receiving long-term treatment with granulocyte colony-stimulating factor. J.A.M.A., 270, 1132–3CrossRefGoogle ScholarPubMed

Fazio, M. T. and Glaspy, J. A. (1991). The impact of granulocyte colony stimulating factor on quality of life in patients with severe chronic neutropenia. Oncol. Nursing Forum, 18, 1411–14Google ScholarPubMed

Mishel, M. H. (1988). Uncertainty in illness. Image, 20, 225–32Google ScholarPubMed

Cohen, S. R., Mount, B. M., Tomas, J., and Mount, L. F. (1996). Existential well-being is an important determinant of quality of life. Cancer, 77, 577–863.0.CO;2-0>CrossRefGoogle ScholarPubMed

Field, M. J. and Cassel, C. K. (eds) (1997). Approaching Death: Improving Care at the End of Life. Washington, DC: National Academies PressGoogle Scholar

Lynn, J. (1997). Measuring quality of care at the end of life: a statement of principles. J. Am. Geriatr. Soc., 45, 526–7Google Scholar

Singer, P. A., Martin, D. K., and Kelner, M. (1999). Quality end-of-life care: patients' perspectives. J.A.M.A., 281, 163–8CrossRefGoogle ScholarPubMed

Steinhauser, K. E., Clipp, E. C., McNeilly, M., McIntyre, L. M., and Tulsky, J. A. (2000). In search of a good death: observations of patients, families, and providers. Ann. Inter. Med., 132, 825–32CrossRefGoogle ScholarPubMed

Teno, J. M., Byock, I., and Field, M. J. (1999). Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness. J. Pain Symptom Manage., 17, 75–82CrossRefGoogle ScholarPubMed

Thomas, M. L., Zhang, J., and Greenberg, P. L. (1999). Quality of life in individuals with myelodysplastic syndromes (MDS): a descriptive study. Blood, 94 (suppl. 1), 662aGoogle Scholar

Yellen, S. B., Cella, D., Webster, K., Blendowski, C., and Kaplan, E. (1997). Measuring fatigue and other anemia-related symptoms with the Functional Assessment of Cancer Therapy (FACT) measurement system. J. Pain Symptom Manage., 13, 63–74CrossRefGoogle ScholarPubMed

Brady, M. J., Peterman, A. H., Fitchett, G., Mo, M., and Cella, D. (1999). A case for including spirituality in quality of life measurement in oncology. Psycho-Oncol., 8, 417–283.0.CO;2-4>CrossRefGoogle Scholar

Ware, J. E. and Sherbourne, C. D. (1992). The MOS 36 Item Short-Form Health Survey (SF 36). I. Conceptual framework and item selection. Med. Care, 30, 473–83CrossRefGoogle ScholarPubMed

, Brooks R. (1996). EuroQoL: the current state of play. Health Policy, 37, 53CrossRefGoogle Scholar

Smets, E. M. A., Garssen, B., Bonke, B., and Haes, J. C. J. M. (1995). Multidimensional Fatigue Inventory (MFI): psychometric qualities of an instrument to assess fatigue. J. Psychosom. Res., 39, 315–25CrossRefGoogle ScholarPubMed

Hellstrom-Lindberg, E., Gulbrandsen, N., Lindberg, G.et al. (2003). A validated decision model for treating the anaemia of myelodysplastic syndromes with erythropoietin + granulocyte colony-stimulating factor: significant effects of quality of life. Br. J. Haematol., 120, 1037–346CrossRefGoogle ScholarPubMed

Aaronson, N. K., Ahmedzai, S., Bergman, B.et al. (1993). The European Organization for Research and Treatment of Cancer QLQ C-30: a quality of life instrument for use in international clinical trials in oncology. J. Natl Cancer Inst., 85, 365–76CrossRefGoogle Scholar

Casadevall, N., Durieux, P., Dubois, S.et al. (2004). Health, economic, and quality-of-life effects of erythropoietin and granulocyte colony-stimulating factor for the treatment of myelodysplastic syndromes: a randomized, controlled trial. Blood, 104, 321–7CrossRefGoogle ScholarPubMed

Cella, D. (1997). The Functional Assessment of Cancer Therapy – Anemia (FACT-An) scale: a new tool for the assessment of outcomes in cancer anemia and fatigue. Semin. Hematol., 34 (suppl. 2), 13–19Google ScholarPubMed

Jaeschke, R., Singer, J., and Guyatt, G. (1989). Measurement of health status: ascertaining the minimally important difference. Control Clinical Trials, 10, 407–15CrossRefGoogle Scholar

Clavio, M., Nobili, F., Balleari, E.et al. (2004). Quality of life and brain function following high-dose recombinant human erythropoietin in low-risk myelodysplastic syndromes: a preliminary report. Eur. J. Haematol., 72, 113–20CrossRefGoogle ScholarPubMed

Kornblith, A. B., Herndon, J. E., Silverman, L. R.et al. (2002). Impact of azacytidine on the quality of life of patients with myelodysplastic syndrome treated in a randomized phase III trial: a Cancer and Leukemia Group B study. J. Clin. Oncol., 20, 2441–52CrossRefGoogle Scholar

Veit, C. T. and Ware, J. E. (1983). The structure of psychological distress and well-being in general populations. J. Consult. Clin. Psychol., 51, 730–42CrossRefGoogle ScholarPubMed

McNair, D. M., Lorr, M., and Droppleman, L. F. (1971). Profile of Moods States. San Diego, CA: Education and Industrial Testing ServiceGoogle Scholar

Schwartz, A. L. (1998). The Schwartz Cancer Fatigue Scale: testing reliability and validity. Oncol. Nursing Forum, 25, 711–17Google ScholarPubMed

Hann, D. M., Jacobsen, P. B., Azzarello, L. M.et al. (1998). Measurement of fatigue in cancer patients: development and validation of the Fatigue Symptom Inventory. Qual. Life Res., 7, 301–10CrossRefGoogle ScholarPubMed

Stein, K. D., Jacobsen, P. B., Blanchard, C. M., and Thors, C. (2004). Further validation of the Multidimensional Fatigue Symptom Inventory-Short Form. J. Pain Symptom Manage., 27, 14–23CrossRefGoogle ScholarPubMed

Piper, B. F., Dibble, S. L., Dodd, M. L.et al. (1998). The revised Piper Fatigue Scale: psychometric evaluation in women with breast cancer. Oncol. Nursing Forum, 25, 677–84Google ScholarPubMed

Mendoza, T. R., Wang, X. S., Cleeland, C. S.et al. (1999). The rapid assessment of fatigue severity in cancer patients. Cancer, 85, 1186–96.3.0.CO;2-N>CrossRefGoogle ScholarPubMed