Abstract
A growing literature demonstrates that MDS is associated with significant impairments in overall quality of life. Given the poor prognosis for many patients with MDS, and the considerable morbidities associated with this disease, there is a critical need to address palliative and end-of-life care needs in this population. However, palliative and end-of-life care issues are under-represented in the MDS literature. In this article, we highlight a growing body of literature that demonstrates unmet palliative and end-of-life care needs in hematologic malignancies, including MDS, and highlight opportunities for further research and quality improvement initiatives to address unmet needs in MDS care.
Similar content being viewed by others
References
Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance
Vardiman JW et al. The 2008 revision of the World Health Organization (WHO) classification of myeloid neoplasms and acute leukemia: rationale and important changes. Blood. 2009;114(5):937–51.
Sekeres MA. The epidemiology of myelodysplastic syndromes. Hematol Oncol Clin North Am. 2010;24(2):287–94.
Ma X. Epidemiology of myelodysplastic syndromes. Am J Med. 2012;125(7 Suppl):S2–5.
Greenberg PL et al. Revised international prognostic scoring system for myelodysplastic syndromes. Blood. 2012;120(12):2454–65.
Malcovati L et al. Time-dependent prognostic scoring system for predicting survival and leukemic evolution in myelodysplastic syndromes. J Clin Oncol. 2007;25(23):3503–10.
List A et al. Lenalidomide in the myelodysplastic syndrome with chromosome 5q deletion. N Engl J Med. 2006;355(14):1456–65.
Garcia-Manero G, Fenaux P. Hypomethylating agents and other novel strategies in myelodysplastic syndromes. J Clin Oncol. 2011;29(5):516–23.
Fenaux P et al. Efficacy of azacitidine compared with that of conventional care regimens in the treatment of higher-risk myelodysplastic syndromes: a randomised, open-label, phase III study. Lancet Oncol. 2009;10(3):223–32.
Luger SM et al. Similar outcomes using myeloablative vs reduced-intensity allogeneic transplant preparative regimens for AML or MDS. Bone Marrow Transplant. 2012;47(2):203–11.
El-Jawahri A et al. Does quality of life impact the decision to pursue stem cell transplantation for elderly patients with advanced MDS? Bone Marrow Transplant. 2016;51(8):1121–6.
LeBlanc TW, El-Jawahri A. When and why should patients with hematologic malignancies see a palliative care specialist? Hematology Am Soc Hematol Educ Program. 2015;2015:471–8. This manuscript describes the modern specialty of palliative care, and provides recommendations about when and how to incorporate specialist palliative care into the management of patients with hematologic malignancies.
LeBlanc TW. Palliative care and hematologic malignancies: old dog, new tricks? J Oncol Pract. 2014;10(6):e404-7.
LeBlanc TW. Addressing end-of-life quality gaps in hematologic cancers: the importance of early concurrent palliative care. JAMA Intern Med. 2016;176(2):265–6.
Hui D et al. Quality of end-of-life care in patients with hematologic malignancies: a retrospective cohort study. Cancer. 2014;120(10):1572–8.
Odejide OO, et al. End-of-life care for blood cancers: a series of focus groups with hematologic oncologists. J Oncol Pract. 2014;10(6):e396-403.
Hui D et al. Differences in attitudes and beliefs toward end-of-life care between hematologic and solid tumor oncology specialists. Ann Oncol. 2015;26(7):1440–6.
LeBlanc TW, et al. Perceptions of palliative care among hematologic malignancy specialists: a mixed-methods study. J Oncol Pract. 2015;11(2):e230-8.
Heptinstall K, I. Myelodysplastic Syndromes Foundation. Quality of life in myelodysplastic syndromes. A special report from the Myelodysplastic Syndromes Foundation, Inc. Oncology (Williston Park). 2008;22(2 Suppl Nurse Ed):13–8. discussion 19.
Steensma DP et al. Common troublesome symptoms and their impact on quality of life in patients with myelodysplastic syndromes (MDS): results of a large internet-based survey. Leuk Res. 2008;32(5):691–8.
Efficace F et al. Prevalence, severity and correlates of fatigue in newly diagnosed patients with myelodysplastic syndromes. Br J Haematol. 2015;168(3):361–70.
Oliva EN et al. Quality of life and physicians’ perception in myelodysplastic syndromes. Am J Blood Res. 2012;2(2):136–47.
Abel GA et al. Patient-reported outcomes for the myelodysplastic syndromes: a new MDS-specific measure of quality of life. Blood. 2014;123(3):451–2.
Lucioni C et al. Costs and quality of life in patients with myelodysplastic syndromes. Am J Blood Res. 2013;3(3):246–59.
Caocci G et al. 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. Leuk Res. 2007;31(2):249–52.
Deschler B et al. Parameters detected by geriatric and quality of life assessment in 195 older patients with myelodysplastic syndromes and acute myeloid leukemia are highly predictive for outcome. Haematologica. 2013;98(2):208–16.
Efficace F et al. Prognostic value of self-reported fatigue on overall survival in patients with myelodysplastic syndromes: a multicentre, prospective, observational, cohort study. Lancet Oncol. 2015;16(15):1506–14.
Thomas ML. Quality of life and psychosocial adjustment in patients with myelodysplastic syndromes. Leuk Res. 1998;22 Suppl 1:S41–7.
Bakitas M et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA. 2009;302(7):741–9.
Bakitas MA et al. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the ENABLE III randomized controlled trial. J Clin Oncol. 2015;33(13):1438–45.
Grudzen CR, Richardson LD, Johnson PN, Hu M, Wang B, Ortiz JM, et al. Emergency Department-Initiated Palliative Care in Advanced Cancer: a randomized clinical trial. JAMA Oncol. 2016. doi:10.1001/jamaoncol.2015.5252.
Temel JS et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.
Zimmermann C et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014;383(9930):1721–30.
Deeg HJ. Treatment ethics, quality of life and health economics in the management of hematopoietic malignancies in older patients. Bone Marrow Transplant. 2015;50(9):1145–9.
Thomas ML, Crisp N, Campbell K. The importance of quality of life for patients living with myelodysplastic syndromes. Clin J Oncol Nurs. 2012;16(Suppl):47–57.
Ansell P et al. What determines referral of UK patients with haematological malignancies to palliative care services? An exploratory study using hospital records. Palliat Med. 2007;21(6):487–92.
Salacz ME, Lankiewicz MW, Weissman DE. Management of thrombocytopenia in bone marrow failure: a review. J Palliat Med. 2007;10(1):236–44.
Fletcher SA et al. Intensity of end-of-life care for patients with myelodysplastic syndromes: findings from a large national database. Cancer. 2016;122(8):1209–15. This manuscript conclusively demonstrates the poor end-of-life care MDS patients receive in the U.S.
Estey E. Acute myeloid leukemia and myelodysplastic syndromes in older patients. J Clin Oncol. 2007;25(14):1908–15.
Kasner MT, Luger SM. Update on the therapy for myelodysplastic syndrome. Am J Hematol. 2009;84(3):177–86.
Gangat N, Patnaik MM, Tefferi A. Myelodysplastic syndromes: contemporary review and how we treat. Am J Hematol. 2016;91(1):76–89.
Ades L, Itzykson R, Fenaux P. Myelodysplastic syndromes. Lancet. 2014;383(9936):2239–52.
Howell DA et al. Destined to die in hospital? Systematic review and meta-analysis of place of death in haematological malignancy. BMC Palliat Care. 2010;9:9.
Howell DA et al. Haematological malignancy: are patients appropriately referred for specialist palliative and hospice care? A systematic review and meta-analysis of published data. Palliat Med. 2011;25(6):630–41.
Fadul N et al. Predictors of access to palliative care services among patients who died at a Comprehensive Cancer Center. J Palliat Med. 2007;10(5):1146–52.
LeBlanc TW, Abernethy AP, Casarett DJ. What is different about patients with hematologic malignancies? A retrospective cohort study of cancer patients referred to a hospice research network. J Pain Symptom Manage. 2015;49(3):505–12.
Odejide OO, Cronin AM, Earle CC, LaCasce AS, Abel GA. Hospice use among patients with lymphoma: impact of disease aggressiveness and curability. J Natl Cancer Inst. 2015;108(1). doi:10.1093/jnci/djv280.
Cheng WW et al. Interval between palliative care referral and death among patients treated at a comprehensive cancer center. J Palliat Med. 2005;8(5):1025–32.
Howell DA, Wang HI, Roman E, Smith AG, Patmore R, Johnson MJ, et al. Preferred and actual place of death in haematological malignancy. BMJ Support Palliat Care. 2015. doi:10.1136/bmjspcare-2014-000793.
Niscola P et al. Caring for terminal patients in haematology: the urgent need of a new research agenda. Support Care Cancer. 2015;23(1):5–7.
LeBlanc TW. In the sandbox: palliative care and hematologic malignancies. J Commun Supp Oncol. 2014;12(2):44–5.
Odejide OO, Cronin AM, Condron NB, Fletcher SA, Earle CC, Tulsky JA, et al. Barriers to quality end-of-life care for patients with blood cancers. J Clin Oncol. 2016;34(26):3126–32.
Hui D et al. Attitudes and beliefs toward supportive and palliative care referral among hematologic and solid tumor oncology specialists. Oncologist. 2015;20(11):1326–32.
LeBlanc TW, et al. Discussing the evidence for upstream palliative care in improving outcomes in advanced cancer. Am Soc Clin Oncol Educ Book. 2016;35:e534-8. This manuscript summarizes the major randomized trials of early palliative care in oncology. The benefits of concurrent palliative care alongside active cancer therapy are truly remarkable, and should be tested further in hematology.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of Interest
Myles Nickolich and Areej El-Jawahri each declare no potential conflicts of interest.
Thomas W. LeBlanc was a consultant for Pfizer and Epi-Q/Janssen and a current consultant for Flatiron.
Human and Animal Rights and Informed Consent
This article does not contain any studies with human or animal subjects performed by any of the authors.
Additional information
This article is part of the Topical Collection on Myelodysplastic Syndromes
Rights and permissions
About this article
Cite this article
Nickolich, M., El-Jawahri, A. & LeBlanc, T.W. Palliative and End-of-Life Care in Myelodysplastic Syndromes. Curr Hematol Malig Rep 11, 434–440 (2016). https://doi.org/10.1007/s11899-016-0352-z
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11899-016-0352-z