Quantitative Measurement of Quality of Life in Adult Patients Undergoing Bone Marrow Transplant or Peripheral Blood Stem Cell Transplant: A Decade in Review
Purpose/Objectives: To critically evaluate a decade of quantitative qual-ity-of-life (QOL) measurement in adult patients undergoing bone marrow transplant (BMT) or peripheral blood stem cell transplant (PBSCT).
Data Sources: Quantitative research articles published between January 1990 and January 2000 in the nursing and medical literature.
Data Synthesis: QOL measures reported in BMT and PBSCT literature support the multidimensional nature of the construct. The majority of studies used a single instrument to assess QOL. Variations in measurement included use of a single versus multiple instruments to assess QOL, theoretical underpinnings of instruments, and output (overall score, domain scores) provided by the instruments.
Conclusions: A study's purpose, conceptual approach, patient burden, and resources available to the researcher should guide decisions regarding QOL instrumentation. No gold standard exists for assessing QOL in research or clinical practice.
Implications for Nursing: Nurses can select from a variety of tools to measure QOL in the BMT and PBSCT patient populations. Clinicians must consider the clinical meaningfulness of changes in QOL before implementing changes in their practice.
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References
Aaronson, N.K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N.J., 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 oncology. Journal of the National Cancer Institute, 85, 365-376.
Andrykowski, M.A. (1994). Psychosocial factors in bone marrow transplantation: A review and recommendations for research. Bone Marrow Transplantation, 13, 357-375.
Andrykowski, M.A., Altmaier, E.M., Barnett, R.L., Otis, M.L., Gingrich, R., & Henslee-Downey, P.J. (1990). The quality of life in adult survivors of allogeneic bone marrow transplantation: Correlates and comparison with matched renal transplant recipients. Transplantation, 50, 399-406.
Andrykowski, M.A., Brady, M.J., & Henslee-Downey, P.J. (1994). Psycho-social factors predictive of survival after allogeneic bone marrow transplantation for leukemia. Psychosomatic Medicine, 56, 432-439.
Andrykowski, M.A., Greiner, C.B., Altmaier, E.M., Burish, T.G., Antin, J.H., Gingrich, R., et al. (1995). Quality of life following bone marrow transplantation: Findings from a multicentre study. British Journal of Cancer, 71, 1322-1329.
Baker, F., Curbow, B., & Wingard, J.R. (1991). Role retention and quality of life of bone marrow transplant survivors. Social Science and Medicine, 32, 697-704.
Baker, F., Curbow, B., & Wingard, J.R. (1992). Development of the Satisfaction With Life Domains Scale for cancer. Journal of Psychosocial Oncology, 10(3), 75-90.
Baker, F., Wingard, J.R., Curbow, B., Zabora, J., Jodrey, D., Fogarty, L., et al. (1994). Quality of life of bone marrow transplant long-term survivors. Bone Marrow Transplantation, 13, 589-596.
Belec, R.H. (1992). Quality of life: Perceptions of long-term survivors of bone marrow transplantation. Oncology Nursing Forum, 19, 31-37.
Bergner, M., Bobbitt, R.A., Carter, W.B., & Gilson, B.S. (1981). The Sickness Impact Profile: Development and final revision of a health status measure. Medical Care, 19, 787-805.
Brorsson, B., Ifver, J., & Hays, R.D. (1993). The Swedish Health-Related Quality of Life Survey (SWED-QUAL). Quality of Life Research, 2, 33-45.
Bush, N.E., Haberman, M., Donaldson, G., & Sullivan, K.M. (1995). Quality of life of 125 adults surviving 6-18 years after bone marrow transplantation. Social Science and Medicine, 40, 479-490.
Cantril, H. (1965). The patterns of human concern. New Brunswick, NJ: Rutgers University Press.
Cella, D., Bullinger, M., Scott, C., Barofsky, I., & Clinical Significance Consensus Meeting Group. (2002). Group vs. individual approaches to understanding the clinical significance of differences or changes in quality of life. Mayo Clinic Proceedings, 77, 384-392.
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. Journal of Clinical Oncology, 11, 570-579.
Chao, N.J., Tierney, K., Bloom, J.R., Long, G.D., Barr, T.A., Stallbaum, B.A., et al. (1992). Dynamic assessment of quality of life after autologous bone marrow transplantation. Blood, 80, 825-830.
Claisse, J.P., Hirsch, I., & Gluckman, E. (1994). Quality of life after an allogeneic bone marrow transplantation: The patient's point of view. Nouvelle Revue Francaise d'Hematologie, 36(Suppl. 1), S83-S84.
Dean, H. (1997). Multiple instruments for measuring quality of life. In M. Frank-Stromborg & S.J. Olsen (Eds.), Instruments for clinical health-care research (2nd ed., pp. 135-148). Boston: Jones and Bartlett.
Donovan, K., Sanson-Fisher, R.W., & Redman, S. (1989). Measuring quality of life in cancer patients. Journal of Clinical Oncology, 7, 959-968.
Ferrans, C.E. (1990). Quality of life: Conceptual issues. Seminars in Oncology Nursing, 6, 248-254.
Ferrans, C.E. (1996). Development of a conceptual model of quality of life. Scholarly Inquiry for Nursing Practice, 10, 293-304.
Ferrans, C.E. (2000). Quality of life as an outcome of cancer care. In C. Yar-bro, M. Frogge, & M. Goodman (Eds.), Cancer nursing: Principles and practice (5th ed., pp. 243-258). Boston, MA: Jones and Bartlett.
Ferrans, C.E., & Powers, M.J. (1985). Quality of Life Index: Development and psychometric properties. Advances in Nursing Science, 8(1), 15-24.
Ferrans, C.E., & Powers, M.J. (1992). Psychometric assessment of the Quality of Life Index. Research in Nursing and Health, 15, 111-119.
Ferrell, B., Grant, M., Schmidt, G.M., Rhiner, M., Whitehead, C., Fonbuena, P., et al. (1992). The meaning of quality of life for bone marrow transplant survivors. Part 1. The impact of bone marrow transplant on quality of life. Cancer Nursing, 15, 153-160.
Frank-Stromborg, M. (1984). Selecting an instrument to measure quality of life. Oncology Nursing Forum, 11(5), 88-91.
Fromm, K., Andrykowski, M.A., & Hunt, J. (1996). Positive and negative psychosocial sequelae of bone marrow transplantation: Implications for quality of life assessment. Journal of Behavioral Medicine, 19, 221-240.
Frost, M.H., Bonomi, A.E., Ferrans, C.E., Wong, G.Y., Hays, R.D, & Clinical Significance Consensus Meeting Group. (2002). Patient, clinician, and population perspectives on determining the clinical significance of quality-of-life scores. Mayo Clinic Proceedings, 77, 488-494.
Garratt, A., Schmidt, L., Mackintosh, A., & Fitzpatrick, R. (2002). Quality of life measurement: Bibliographic study of patient assessed health outcome measures. BMJ, 324, 1417-1421.
Gaston-Johansson, F., & Foxall, M. (1996). Psychological correlates of quality of life across the autologous bone marrow transplant experience. Cancer Nursing, 19, 170-176.
Gill, T.M., & Feinstein, A.R. (1994). A critical appraisal of quality-of-life measurements. JAMA, 272, 619-626.
Grant, M., Ferrell, B., Schmidt, G.M., Fonbuena, P., Niland, J.C., & Forman, S.J. (1992). Measurement of quality of life in bone marrow transplantation survivors. Quality of Life Research, 1, 375-384.
Guyatt, G.H., & Jaeschke, R. (1990). Measurements in clinical trials: Choosing the appropriate approach. In B. Spilker (Ed.), Quality of life assessments in clinical trials (pp. 37-46). New York: Raven.
Guyatt, G.H., Osoba, D., Wu, A.W., Wyrwich, K.W., Norman, G.R., & Clinical Significance Consensus Meeting Group. (2002). Methods to explain the clinical significance of health status measures. Mayo Clinic Proceedings, 77, 371-383.
Hann, D.M., Garovoy, N., Finkelstein, B., Jacobsen, P.B., Azzarello, L.M., & Fields, K.K. (1999). Fatigue and quality of life in breast cancer patients undergoing autologous stem cell transplantation: A longitudinal comparative study. Journal of Pain and Symptom Management, 17, 311-319.
Hann, D.M., Jacobsen, P.B., Martin, S.C., Kronish, L.E., Azzarello, L.M., & Fields, K.K. (1997). Quality of life following bone marrow transplantation for breast cancer: A comparative study. Bone Marrow Transplantation, 19, 257-264.
Hjermstad, M.J., Evensen, S.A., Kvaloy, S.O., Fayers, P.M., & Kaasa, S. (1999). Health-related quality of life 1 year after allogeneic or autologous stem-cell transplantation: A prospective study. Journal of Clinical Oncology, 17, 706-718.
Hjermstad, M.J., & Kaasa, S. (1995). Quality of life in adult cancer patients treated with bone marrow transplantation—A review of the literature. European Journal of Cancer, 31A(2), 163-173.
Jalowiec, A. (1990). Issues in using multiple measures of quality of life. Seminars in Oncology Nursing, 6, 271-277.
King, C.R., Haberman, M., Berry, D.L., Bush, N., Butler, L., Dow, K.H., et al. (1997). Quality of life and the cancer experience: The state-of-the-knowledge. Oncology Nursing Forum, 24, 27-41.
Kopp, M., Schweigkofler, H., Holzner, B., Nachbaur, D., Niederwieser, D., Fleischhacker, W.W., et al. (1998). Time after bone marrow transplantation as an important variable for quality of life: Results of a cross-sectional investigation using two different instruments for quality-of-life assessment. Annals of Hematology, 77, 27-32.
Larsen, J., Gardulf, A., Nordstrom, G., Bjorkstrand, B., & Ljungman, P. (1996). Health-related quality of life in women with breast cancer undergoing autologous stem-cell transplantation. Cancer Nursing, 19, 368-375.
Litwins, N.M., Rodrigue, J.R., & Weiner, R.S. (1994). Quality of life in adult recipients of bone marrow transplantation. Psychological Reports, 75(1 Pt. 1), 323-328.
Marks, D.I., Gale, D.J., Vedhara, K., & Bird, J.M. (1999). A quality of life study in 20 adult long-term survivors of unrelated donor bone marrow transplantation. Bone Marrow Transplantation, 24, 191-195.
McQuellon, R.P., Craven, B., Russell, G.B., Hoffman, S., Cruz, J.M., Perry, J.J., et al. (1996). Quality of life in breast cancer patients before and after autologous bone marrow transplantation. Bone Marrow Transplantation, 18, 579-584.
McQuellon, R.P., Russell, G.B., Cella, D.F., Craven, B.L., Brady, M., Bonomi, A., et al. (1997). Quality of life measurement in bone marrow transplantation: Development of the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) scale. Bone Marrow Transplantation, 19, 357-368.
McQuellon, R.P., Russell, G.B., Rambo, T.D., Craven, B.L., Radford, J., Perry, J.J., et al. (1998). Quality of life and psychological distress of bone marrow transplant recipients: The ‘time trajectory’ to recovery over the first year. Bone Marrow Transplantation, 21, 477-486.
Molassiotis, A. (1996). Late psychosocial effects of conditioning for BMT. British Journal of Nursing, 5, 1296-1302.
Molassiotis, A. (Boughton, B.J., Burgoyne, T., & van den Akker, O.B. (1995). Comparison of the overall quality of life in 50 long-term survivors of autologous and allogeneic bone marrow transplantation. Journal of Advanced Nursing, 22, 509-516.
Molassiotis, A., & Morris, P.J. (1999). Quality of life in patients with chronic myeloid leukemia after unrelated donor bone marrow transplantation. Cancer Nursing, 22, 340-349.
Molassiotis, A., van den Akker, O.B., Milligan, D.W., Goldman, J.M., Bough-ton, B.J., Holmes, J.A., et al. (1996). Quality of life in long-term survivors of marrow transplantation: Comparison with a matched group receiving maintenance chemotherapy. Bone Marrow Transplantation, 17, 249-258.
Molzahn, A.E., Northcott, H.C., & Dossetor, J.B. (1997). Quality of life of individuals with end stage renal disease: Perceptions of patients, nurses, and physicians. ANNA Journal, 24, 325-333.
National Cancer Institute. (1988). Cancer Therapy Evaluation Program. Bethesda, MD: Author.
Neitzert, C.S., Ritvo, P., Dancey, J., Weiser, K., Murray, C., & Avery, J. (1998). The psychosocial impact of bone marrow transplantation: A review of the literature. Bone Marrow Transplantation, 22, 409-422.
Osoba, D. (1994). Lessons learned from measuring health-related quality of life in oncology. Journal of Clinical Oncology, 12, 608-616.
Osoba, D. (1999). What has been learned from measuring health-related quality of life in clinical oncology. European Journal of Cancer, 35, 1565-1570.
Rowe, J.M., Ciobanu, N., Ascensao, J., Stadtmauer, E.A., Weiner, R.S., Schenkein, D.P., et al. (1994). Recommended guidelines for the management of autologous and allogeneic bone marrow transplantation. Annals of Internal Medicine, 120, 143-158.
Schag, C.A.C., & Heinrich, R.L. (1988). Cancer rehabilitation evaluation system (CARES) manual. Santa Monica, CA: CARES Consultants.
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. Journal of Clinical Oncology, 2, 472-483.
Sloan, J.A., Cella, D., Frost, M., Guyatt, G.H., Sprangers, M., Symonds, T., et al. (2002). Assessing clinical significance in measuring oncology patient quality of life: Introduction to the symposium, content overview, and definition of terms. Mayo Clinic Proceedings, 77, 367-370.
Sprangers, M.A., & Aaronson, N.K. (1992). Role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review. Journal of Clinical Epidemiology, 45, 743-760.
Sprangers, M.A., Moinpour, C.M., Moynihan, T.J., Patrick, D.L., Revicki, D.A., & Clinical Significance Consensus Meeting Group. (2002). Assessing meaningful change over time in quality of life: A users' guide for clinicians. Mayo Clinic Proceedings, 77, 561-571.
Sutherland, H.J., Fyles, G.M., Adams, G., Hao, Y., Lipton, J.H., Minden, M.D., et al. (1997). Quality of life following bone marrow transplantation: A comparison of patient reports with population norms. Bone Marrow Transplantation, 19, 1129-1136.
Symonds, T., Berzon, R., Marquis, P., Rummans, T.A., & Clinical Significance Consensus Meeting Group. (2002). The clinical significance of quality-of-life results: Practical considerations for specific audiences. Mayo Clinic Proceedings, 77, 572-583.
Syrjala, K.L., Chapko, M.K., Vitaliano, P.P., Cummings, C., & Sullivan, K.M. (1993). Recovery after allogeneic marrow transplantation: Prospective study of predictors of long-term physical and psychosocial functioning. Bone Marrow Transplantation, 11, 319-327.
Ware, J.E., Jr., & Sherbourne, C.D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30, 473-483.
Watson, M., Zittoun, R., Hall, E., Solbu, G., & Wheatley, K. (1996). A modular questionnaire for the assessment of longterm quality of life in leukaemia patients: The MRC/EORTC QLQ-LEU. Quality of Life Research, 5(1), 15-19.
Weiss, R.B. (1999). Introduction: Dose-intensive therapy for adult malignancies. Seminars in Oncology, 26, 1-5.
Wellisch, O.K., Centeno, J., Guzman, J., Belin, T., & Schiller, G.J. (1996). Bone marrow transplantation vs. high-dose cytorabine-based consolidation chemotherapy for acute myelogenous leukemia: A long-term follow-up study of quality-of-life measures of survivors. Psychosomatics, 37, 144-154.
Whedon, M., & Ferrell, B.R. (1994). Quality of life in adult bone marrow transplant patients: Beyond the first year. Seminars in Oncology Nursing, 10, 42-57.
Whedon, M., Stearns, D., & Mills, L.E. (1995). Quality of life of long-term adult survivors of autologous bone marrow transplantation. Oncology Nursing Forum, 22, 1527-1537.
Winer, E.P., Lindley, C., Hardee, M., Sawyer, W.T., Brunatti, C., Borstel-mann, N.A., et al. (1999). Quality of life in patients surviving at least 12 months following high dose chemotherapy with autologous bone marrow support. Psycho-Oncology, 8, 167-176.
Zittoun, R., Achard, S., & Ruszniewski, M. (1999). Assessment of quality of life during intensive chemotherapy or bone marrow transplantation. Psycho-Oncology, 8, 64-73.
Zubrod, C.G., Schneiderman, M., Frei, E., Brindley, C., Gold, G.L., Shnider, B., et al. (1960). Appraisal of methods for the study of chemotherapy of cancer in man: Comparative therapeutic trial of nitrogen mustard and triethylene thiophosphoramide. Journal of Chronic Disease, 11, 7-33.