No votes yet

The Importance of Quality of Life for Patients Living With Myelodysplastic Syndromes

Mary Laudon Thomas
Nicole Crisp
Karen Campbell
CJON 2012, 16(3), 47-57 DOI: 10.1188/12.CJON.S1.47-57

Myelodysplastic syndromes (MDS) are a group of myeloid stem cell clonal disorders characterized by a wide variation in illness trajectory and potential treatment. The physical, functional, emotional, social, and spiritual well-being of individuals with MDS can be affected by both disease and treatment-related factors. As a result, the quality of life (QOL) in patients with MDS may vary throughout the course of the illness. To date, most research exploring QOL in patients with MDS has been conducted as part of clinical trials evaluating the effectiveness of a therapeutic intervention. Although data from those studies are useful, they do not fully address the issues critical to maintaining or maximizing QOL. Oncology nurses are in a key position to assist patients with MDS to maintain their QOL. Findings from comprehensive QOL assessments will guide nurses in providing relevant interventions and evaluating their outcomes. In this manner, oncology nurses can assist their patients to maximize QOL while living with this challenging illness.


Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., … de Haes, J. C. (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. <i>Journal of the National Cancer Institute, 85</i>, 365-376.

Armour, A., Pallister, C., & Howells, S. (2004). <i>Cancer-related anaemia and fatigue: Recent advances, current controversies.</i> Flintshire, England: Rx Communications.

Balleari, E., Rossi, E., Clavio, M., Congiu, A., Gobbi, M., Grosso, M., … Ghio, R. (2006). Erythropoietin plus granulocyte colony-stimulating factor is better than erythropoietin alone to treat anemia in low-risk myelodysplastic syndromes: Results from a randomized single-centre study <i>Annals of Hematology, 85</i>, 174-180. doi:10.1007/s00277-005-0044-6

Breccia, M., Federico, V., Loglisci, G., Salaroli, A., Serrao, A., & Alimena, G. (2011). Evaluation of overall survival according to myelodysplastic syndrome-specific comorbidity index in a large series of myelodysplastic syndromes. <i>Haematologica, 96</i>, e41-e42. doi:10.3324/haematol.2011.048991

Cancer Support Community. (2010). <i>Financial burdens of cancer care can cause severe post-traumatic stress among cancer patients, caregivers.</i> Retrieved from <a target="_blank" href='http://www.cancersupportcommunityma.org/releases/TWC%20Rel%20Cancer%20Fi...

Caocci, G., Baccoli, R., Ledda, A., Littera, R., & La Nasa, G. (2007). A mathematical model for the evaluation of amplitude of hemoglobin fluctuations in elderly anemic patients affected by myelodysplastic syndromes: Correlation with quality of life and fatigue. <i>Leukemia Research, 31</i>, 249-252. doi:10.1016/j.leukres.2006.05.015

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. <i>Seminars in Hematology, 34</i>(3, Suppl 2), 13-19.

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

Cimprich, B. (1993). Development of an intervention to restore attention in cancer patients. <i>Cancer Nursing, 16</i>, 83-92.

Clegg, A., & Young, J. (2011). The frailty syndrome. <i>Clinical Medicine (London), 11</i>, 72-75.

Crisp, N. (2010). <i>Chemotherapy at home: Keeping patients in their "natural habitat"</i> (Unpublished master's thesis). University of Alberta, Edmonton, Canada.

Efficace, F., Alimena, G., Voso, M., Caocci, G., Di Tucci, A., Stuader, R., … Mandelli, F. (2011). Involvement in treatment decisions, desire for prognostic information, and quality of life in high-risk myelodysplastic syndromes: The physician's perspective [Abstract 147]. <i>Leukemia Research, 35</i>(Suppl. 1), S57.

Gatlin, C. G., & Schulmeister, L. (2007). When medication is not enough: Nonpharmacologic management of pain. <i>Clinical Journal of Oncology Nursing, 11</i>, 699-704.

George, L. K. (2010). Still happy after all these years: Research frontiers on subjective well-being in later life. <i>Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 65B</i>, 331-339. doi:10.1093/geronb/gbq006

Glaus, A. (1998). Fatigue in patients with cancer. Analysis and assessment. <i>Recent Results in Cancer Research, 145</i>(I-XI), 1-172.

Gourin, M. P., Gachard, N., Trimoreau, F., Abraham, J., Moreau, S., Mallissein, E., … Bordessoule, D. (2011). Myelodysplastic syndrome in very elderly patients: Practice in the real life. Preliminary results on a monocentric cohort [Abstract 148]. <i>Leukemia Research, 35</i>(Suppl. 1), S58.

Graydon, J. E., Bubela, N., Irvine, D., & Vincent, L. (1995). Fatigue-reducing strategies used by patients receiving treatment for cancer. <i>Cancer Nursing, 18</i>, 23-28.

Greenberg, P. L., Sun, Z., Miller, K. B., Bennett, J. M., Tallman, M. S., Dewald, G., … Rowe, J. M. (2009). Treatment of myelodysplastic syndrome patients with erythropoietin with or without granulocyte colony-stimulating factor: Results of a prospective randomized phase 3 trial by the Eastern Cooperative Oncology Group (E1996). <i>Blood, 114</i>, 2393-2400. doi:10.1182/blood-2009-03-211797

Hellström-Lindberg, E., Gulbrandsen, N., Lindberg, G., Ahlgren, T., Dahl, I. M., Dybedal, I., … Scandinavian MDS Group. (2003). A validated decision model for treating the anaemia of myelodysplastic syndromes with erythropoietin plus granulocyte colony-stimulating factor: Significant effects on quality of life. <i>British Journal of Haematology, 120</i>, 1037-1046. doi:10.1046/j.1365-2141.2003.04153.x

Hicks, F. (2003). The last days of life. In S. Booth, E. Bruera, & J. Craig (Eds.), <i>Palliative care consultations in haemato-oncology</i> (pp. 237-248). New York, NY: Oxford University Press.

Hurst, N. P., Kind, P., Ruta, D., Hunter, M., & Stubbings, A. (1997). Measuring health-related quality of life in rheumatoid arthritis: Validity, responsiveness, and reliability of EuroQol (EQ-5D). <i>British Journal of Rheumatology, 36</i>, 551-559.

Jansen, A. J. G., Essink-Bot, M. L., Beckers, E. A. M., Hop, W. C. J., Schipperus, M. R., & van Rhenen, D. J. (2003). Quality of life measurement in patients with transfusion-dependent myelodysplastic syndromes. <i>British Journal of Haematology, 121</i>, 270-274. doi:10.1046/j.1365-2141.2003.04272.x

Kantarjian, H., Issa, J. P., Rosenfeld, C. S., Bennett, J. M., Albitar, M., DiPersio, J., … Saba, H. (2006). Decitabine improves patient outcomes in myelodysplastic syndromes: Results of a phase III randomized study. <i>Cancer, 106</i>, 1794-1803. doi:10.1002/cncr.21792

Klärner, V., Kuendgen, A., Schroeder, T., Weigelt, C., Saure, C., Dienst, A., … Germing, U. (2011). Analysis of treatment choices and outcome for MDS and AML patients 60 years and older from the University of Dusseldorf [Abstract 93]. <i>Leukemia Research, 35</i>(Suppl. 1), S35.

Kornblith, A. B., Herndon, J. E., 2nd, Silverman, L. R., Demakos, E. P., Odchimar-Reissig, R., Holland, J. F., … Holland, J. C. (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. <i>Journal of Clinical Oncology, 20</i>, 2441-2452. doi:10.1200/JCO.2002.04.044

Kurtin, S. (2010). Risk analysis in the treatment of hematological malignancies in the elderly. <i>Journal of the Advanced Practitioner in Oncology, 1</i>, 119-129.

Latsko, J. (2011). Uncertainty and distress associated with myelodysplastic syndromes (MDS). <i>MDS News: Newsletter of the MDS Foundation, 17</i>, 1-3.

Lindquist, K. J., Danese, M. D., Mikhael, J., Knopf, K. B., & Griffiths, R. I. (2011). Health care utilization and mortality among elderly patients with myelodysplastic syndromes. <i>Annals of Oncology, 22</i>, 1181-1188. doi:10.1093/annonc/mdq552

Longo, C. J., Fitch, M., Deber, R. B., & Williams, A. P. (2006). Financial and family burden associated with cancer treatment in Ontario, Canada. <i>Supportive Care in Cancer, 14</i>, 1077-1085. doi:10.1007/s00520-006-0088-8

Lübbert, M., Suciu, S., Baila, L., Ruter, B. H., Platzbecker, U., Giagounidis, A., … Wijermans, P. W. (2011). Low-dose decitabine versus best supportive care in elderly patients with intermediate- or high-risk myelodysplastic syndrome (MDS) ineligible for intensive chemotherapy: Final results of the randomized phase III study of the European Organisation for Research and Treatment of Cancer Leukemia Group and the German MDS Study Group. <i>Journal of Clinical Oncology, 29</i>, 1987-1996. doi:10.1200/JCO.2010.30.9245

MacLaughlin, E. J., Raehl, C. L., Treadway, A. K., Sterling, T. L., Zoller, D. P., & Bond, C. A. (2005). Assessing medication adherence in the elderly: Which tools to use in clinical practice? <i>Drugs and Aging, 22</i>, 231-255.

Martelli-Reid, L., Cole, S., Hapke, S., Miscione, M., Poirier, J., Ross, N., & Harper, T. (2010). <i>Getting the air you need: A practical guide to coping with and managing shortness of breath.</i> Hamilton, Ontario, Canada: Juravinski Cancer Centre.

McCormick, K. M. (2002). A concept analysis of uncertainty in illness. <i>Journal of Nursing Scholarship, 34</i>, 127-131. doi:10.1111/j.1547-5069.2002.00127.x

McGrath, P. (2002). Qualitative findings on the experience of end-of-life care for hematological malignancies. <i>American Journal of Hospice and Palliative Care, 19</i>, 103-111.

McGrath, P., & Holewa, H. (2006). Missed opportunities: Nursing insights on end-of-life care for haematology patients. <i>International Journal of Nursing Practice, 12</i>, 295-301. doi:10.1111/j.1440-172X.2006.00585.x

McGrath, P., & Holewa, H. (2007a). Special considerations for haematology patients in relation to end-of-life care: Australian findings. <i>European Journal of Cancer Care, 16</i>, 164-171. doi:10.1111/j.1365-2354.2006.00745.x

McGrath, P. D., & Holewa, H. A. (2007b). Description of an Australian model for end-of-life care in patients with hematologic malignancies. <i>Oncology Nursing Forum, 34</i>, 79-85. doi:10.1188/07.ONF.79-85

Mendoza, T. R., Wang, X. S., Cleeland, C. S., Morrissey, M., Johnson, B. A., Wendt, J. K., & Huber, S. L. (1999). The rapid assessment of fatigue severity in cancer patients: Use of the Brief Fatigue Inventory. <i>Cancer, 85</i>, 1186-1196.

Meyers, C. A., Albitar, M., & Estey, E. (2005). Cognitive impairment, fatigue, and cytokine levels in patients with acute myelogenous leukemia or myelodysplastic syndrome. <i>Cancer, 104</i>, 788-793. doi:10.1002/cncr.21234

Mishel, M. H. (1988). Uncertainty in illness. <i>Image—The Journal of Nursing Scholarship, 20</i>, 225-232.

Naqvi, K., Garcia-Manero, G., Sardesai, S., Oh, J., Vigil, C. E., Pierce, S., … Suarez-Almazor, M. E. (2011). Association of comorbidities with overall survival in myelodysplastic syndrome: Development of a prognostic model. <i>Journal of Clinical Oncology, 29</i>, 2240-2246. doi:10.1200/JCO.2010.31.3353

Nilsson-Ehle, H., Birgegård, G., Samuelsson, J., Antunovic, P., Astermark, J., Garelius, H., … Hellström-Lindberg, E. (2011). Quality of life, physical function and MRI T2<sup>*</sup> in elderly low-risk MDS patients treated to a haemoglobin level of ≥120 g/L with darbepoetin alfa ± filgrastim or erythrocyte transfusions. <i>European Journal of Haematology, 87</i>, 244-252. doi:10.1111/j.1600-0609.2011.01654.x

Pashos, C. L., Grinblatt, D. L., Sekeres, M. D., Komrokji, R. S., Narang, M., Street, T. K., … Khan, Z. M. (2011). Health-related quality of life by RBC transfusion dependence (TD) or independence (TI) of patients (pts) initiating treatment for MDS [Abstract 155]. <i>Leukemia Research, 35</i>(Suppl. 1), S61.

Pereira, J. L. (2008). <i>The pallium palliative pocketbook: A peer-reviewed, referenced resource.</i> Edmonton, Alberta, Canada: The Pallium Project.

Pleyer, L., Stauder, R., Thaler, J., Ludwig, H., Pfeilstoecker, M., Steinkirchner, S., … Greil, R. (2011). Age- and comorbidity-specific evaluation of azacitidine treatment, response and overall survival in 184 patients in the Austrian Azacitidine Registry [Abstract 101]. <i>Leukemia Research, 35</i>(Suppl. 1), S38-S39.

Protière, C., Moumjid, N., Bouhnik, A. D., Le Corroller Soriano, A. G., & Moatti, J. P. (2011). Heterogeneity of cancer patient information-seeking behaviors. Retrieved from <a target="_blank" href='http://mdm.sagepub.com/content/early/2011/08/24/0272989X11415114.long'>h...

Ream, E., Pallister, C., & Clarke, H. (2004). <i>Cancer and quality of life: Recent advances, current controversies.</i> Flintshire, England: Rx Communications.

Richards, T. A., Berlotti, P. A., Doss, D., & McCullagh, E. J. (2011). Sexual dysfunction in multiple myeloma: Survivorship care plan of the Multiple Myeloma Foundation Nurse Leadership Board. <i>Clinical Journal of Oncology Nursing, 15</i>(Suppl. 4), S53-S65.

Ritchie, E. K., & Lachs, M. S. (2009). Management of myelodysplastic syndromes in the geriatric patient. <i>Current Hematologic Malignancy Reports, 4</i>, 3-9. doi:10.1007/s11899-009-0001-x

Rodin, G., Mackay, J. A., Zimmermann, C., Mayer, C., Howell, D., Katz, M., … Brouwers, M. (2009). Clinician-patient communication: A systematic review. <i>Supportive Care in Cancer, 17</i>, 627-644. doi:10.1007/s00520-009-0601-y

Ross, S. D., Allen, I. E., Probst, C. A., Sercus, B., Crean, S. M., & Ranganathan, G. (2007). Efficacy and safety of erythropoiesis-stimulating proteins in myelodysplastic syndrome: A systematic review and meta-analysis. <i>Oncologist, 12</i>, 1264-1273. doi:10.1634/theoncologist.12-10-1264

Sekeres, M. A., Schoonen, W. M., Kantarjian, H., List, A., Fryzek, J., Paquette, R., & Maciejewski, J. P. (2008). Characteristics of US patients with myelodysplastic syndromes: Results of six cross-sectional physician surveys. <i>Journal of the National Cancer Institute, 100</i>, 1542-1551. doi:10.1093/jnci/djn349

Seymour, J. F., Fenaux, P., Silverman, L. R., Mufti, G. J., Hellström-Lindberg, E., Santini, V., … Beach, C. L. (2010). Effects of azacitidine compared with conventional care regimens in elderly (≥ 75 years) patients with higher-risk myelodysplastic syndromes. <i>Critical Reviews in Oncology/Hematology, 76</i>, 218-227.doi:10.1016/j.critrevonc.2010.04.005

Silverman, L. R., McKenzie, D. R., Peterson, B. L., Demakos, E. P., Malone, N. T., Holland, J. F., … The Cancer Leukemia Group B (CALGB). (2005). Azacitidine prolongs survival and time to AML transformation in high-risk myelodysplastic syndrome (MDS) patients >= 65 years of age [Abstract 1848]. <i>ASH Annual Meeting Abstracts, 106</i>, 2524.

Smets, E. M., Garssen, B., Bonke, B., & De Haes, J. C. (1995). The Multidimensional Fatigue Inventory (MFI): Psychometric qualities of an instrument to assess fatigue. <i>Journal of Psychosomatic Research, 39</i>, 315-325.

Spiriti, M. A., Latagliata, R., Niscola, P., Cortelezzi, A., Francesconi, M., Ferrari, D., … Petti, M. C. (2005). Impact of a new dosing regimen of epoetin alfa on quality of life and anemia in patients with low-risk myelodysplastic syndrome. <i>Annals of Hematology, 84</i>, 167-176. doi:10.1007/s00277-004-0961-9

Stasi, R., Abruzzese, E., Lanzetta, G., Terzoli, E., & Amadori, S. (2005). Darbepoetin alfa for the treatment of anemic patients with low- and intermediate-1-risk myelodysplastic syndromes. <i>Annals of Oncology, 16</i>, 1921-1927. doi:10.1093/annonc/mdi400

Stauder, R., Smith, A., de Witte, T., Proste, J., Fenaux, P., Symeonidis, A., … Bowen, D. (2011). Health-related quality of life in low-risk MDS patients from the European LeukemiaNet Registry: Correlation with age, gender and decreased survival [Abstract 34]. <i>Leukemia Research, 35</i>(Suppl. 1), S12. doi:10.1016/S0145-2126(11)70036-4

Steensma, D. P., Heptinstall, K. V., Johnson, V. M., Novotny, P. J., Sloan, J. A., Camoriano, J. K., … Mesa, R. A. (2008). Common troublesome symptoms and their impact on quality of life in patients with myelodysplastic syndromes (MDS): Results of a large Internet-based survey. <i>Leukemia Research, 32</i>, 691-698. doi:10.1016/j.leukres.2007.10.015

Thomas, M. L. (2006). Health-related quality of life for those with myelodysplastic syndrome: Conceptualization, measurement and implications for research and practice. In P. Greenberg (Ed.), <i>Myelodysplastic syndromes: Clinical and biological advances</i> (pp. 263-295). Cambridge, England: Cambridge University Press.

Thomas, M. L. (2012). The impact of myelodysplastic syndromes on quality of life: Lessons learned from 70 voices. <i>Journal of Supportive Oncology, 10</i>, 37-44.

Thomas, M. L., Heptinstall, K., & Hassan, A. (2005). The importance of the patient-physician relationship in myelodysplastic syndromes [Abstract 1340]. Retrieved from <a target="_blank" href='http://abstracts.hematologylibrary.org/cgi/content/abstract/106/11/3847?...

Thomas, M. L., Zhang, J., & Greenberg, P. (1999). Quality of life in individuals with myelodysplastic syndromes (MDS): A descriptive study [Abstract]. <i>Blood, 94</i>(Suppl. 1), 662a.

Thuret, I., Hacini, M., Pegourie-Bandelier, B., Gardembas-Pain, M., Bisot-Locard, S., Merlat-Guitard, A., & Bachir, D. (2009). Socio-psychological impact of infused iron chelation therapy with deferoxamine in metropolitan France: ISOSFER study results. <i>Hematology, 14</i>, 315-322. doi:10.1179/102453309X12473408860424

Veit, C. T., & Ware, J. E., Jr. (1983). The structure of psychological distress and well-being in general populations. <i>Journal of Consulting and Clinical Psychology, 51</i>, 730-742.

Villegas, A., Arrizabalaga, B., Fernandez-Lago, C., Castro, M., Mayans, J. R., Gonzalez-Porras, J. R., … Gasquet, J. A. (2011). Darbepoetin alfa for anemia in patients with low or intermediate-1 risk myelodysplastic syndromes and positive predictive factors of response. <i>Current Medical Research and Opinion, 27</i>, 951-960. doi:10.1185/03007995.2011.561834

Visovsky, C., & Schneider, S. M. (2003). Cancer-related fatigue. Retrieved from <a target="_blank" href='http://nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals...

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, 30</i>, 473-483.

Williams, A. L. (2006). Perspectives on spirituality at the end of life: A meta-summary. <i>Palliative and Supportive Care, 4</i>, 407-417.

World Health Organization. (1996). <i>Cancer pain relief: With a guide to opioid availability</i> (2nd ed.). Geneva, Switzerland: Author.

World Health Organization. (1997). <i>WHOQOL: Measuring quality of life.</i> Geneva, Switzerland: Division of Mental Health and Prevention of Substance Abuse, World Health Organization.

Yellen, S. B., Cella, D. F., Webster, K., Blendowski, C., & Kaplan, E. (1997). Measuring fatigue and other anemia-related symptoms with the Functional Assessment of Cancer Therapy (FACT) measurement system. <i>Journal of Pain and Symptom Management, 13</i>, 63-74.