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Published in: Current Hematologic Malignancy Reports 6/2016

01-12-2016 | Myelodysplastic Syndromes (D Steensma, Section Editor)

Palliative and End-of-Life Care in Myelodysplastic Syndromes

Authors: Myles Nickolich, Areej El-Jawahri, Thomas W. LeBlanc

Published in: Current Hematologic Malignancy Reports | Issue 6/2016

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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.
Literature
1.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
2.
go back to reference Sekeres MA. The epidemiology of myelodysplastic syndromes. Hematol Oncol Clin North Am. 2010;24(2):287–94.CrossRefPubMed Sekeres MA. The epidemiology of myelodysplastic syndromes. Hematol Oncol Clin North Am. 2010;24(2):287–94.CrossRefPubMed
5.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
6.
go back to reference List A et al. Lenalidomide in the myelodysplastic syndrome with chromosome 5q deletion. N Engl J Med. 2006;355(14):1456–65.CrossRefPubMed List A et al. Lenalidomide in the myelodysplastic syndrome with chromosome 5q deletion. N Engl J Med. 2006;355(14):1456–65.CrossRefPubMed
8.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
9.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
10.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
11.••
go back to reference 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.PubMed 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.PubMed
12.
go back to reference LeBlanc TW. Palliative care and hematologic malignancies: old dog, new tricks? J Oncol Pract. 2014;10(6):e404-7. LeBlanc TW. Palliative care and hematologic malignancies: old dog, new tricks? J Oncol Pract. 2014;10(6):e404-7.
13.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
14.
15.
go back to reference 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. 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.
16.
go back to reference 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.PubMedPubMedCentral 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.PubMedPubMedCentral
17.
go back to reference LeBlanc TW, et al. Perceptions of palliative care among hematologic malignancy specialists: a mixed-methods study. J Oncol Pract. 2015;11(2):e230-8. LeBlanc TW, et al. Perceptions of palliative care among hematologic malignancy specialists: a mixed-methods study. J Oncol Pract. 2015;11(2):e230-8.
18.
go back to reference 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. 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.
19.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
20.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
21.
go back to reference Oliva EN et al. Quality of life and physicians’ perception in myelodysplastic syndromes. Am J Blood Res. 2012;2(2):136–47.PubMedPubMedCentral Oliva EN et al. Quality of life and physicians’ perception in myelodysplastic syndromes. Am J Blood Res. 2012;2(2):136–47.PubMedPubMedCentral
22.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
23.
go back to reference Lucioni C et al. Costs and quality of life in patients with myelodysplastic syndromes. Am J Blood Res. 2013;3(3):246–59.PubMedPubMedCentral Lucioni C et al. Costs and quality of life in patients with myelodysplastic syndromes. Am J Blood Res. 2013;3(3):246–59.PubMedPubMedCentral
24.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
25.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
26.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
27.
go back to reference Thomas ML. Quality of life and psychosocial adjustment in patients with myelodysplastic syndromes. Leuk Res. 1998;22 Suppl 1:S41–7.CrossRefPubMed Thomas ML. Quality of life and psychosocial adjustment in patients with myelodysplastic syndromes. Leuk Res. 1998;22 Suppl 1:S41–7.CrossRefPubMed
28.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
29.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
30.
go back to reference 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. 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.
31.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
32.
go back to reference Zimmermann C et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014;383(9930):1721–30.CrossRefPubMed Zimmermann C et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014;383(9930):1721–30.CrossRefPubMed
33.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
34.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
35.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
36.
go back to reference Salacz ME, Lankiewicz MW, Weissman DE. Management of thrombocytopenia in bone marrow failure: a review. J Palliat Med. 2007;10(1):236–44.CrossRefPubMed Salacz ME, Lankiewicz MW, Weissman DE. Management of thrombocytopenia in bone marrow failure: a review. J Palliat Med. 2007;10(1):236–44.CrossRefPubMed
37.••
go back to reference 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. CrossRefPubMed 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. CrossRefPubMed
38.
go back to reference Estey E. Acute myeloid leukemia and myelodysplastic syndromes in older patients. J Clin Oncol. 2007;25(14):1908–15.CrossRefPubMed Estey E. Acute myeloid leukemia and myelodysplastic syndromes in older patients. J Clin Oncol. 2007;25(14):1908–15.CrossRefPubMed
39.
go back to reference Kasner MT, Luger SM. Update on the therapy for myelodysplastic syndrome. Am J Hematol. 2009;84(3):177–86.CrossRefPubMed Kasner MT, Luger SM. Update on the therapy for myelodysplastic syndrome. Am J Hematol. 2009;84(3):177–86.CrossRefPubMed
40.
go back to reference Gangat N, Patnaik MM, Tefferi A. Myelodysplastic syndromes: contemporary review and how we treat. Am J Hematol. 2016;91(1):76–89.CrossRefPubMed Gangat N, Patnaik MM, Tefferi A. Myelodysplastic syndromes: contemporary review and how we treat. Am J Hematol. 2016;91(1):76–89.CrossRefPubMed
41.
42.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
43.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
44.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
45.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
46.
go back to reference 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. 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.
47.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
48.
go back to reference 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. 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.
49.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
50.
go back to reference LeBlanc TW. In the sandbox: palliative care and hematologic malignancies. J Commun Supp Oncol. 2014;12(2):44–5.CrossRef LeBlanc TW. In the sandbox: palliative care and hematologic malignancies. J Commun Supp Oncol. 2014;12(2):44–5.CrossRef
51.
go back to reference 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. 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.
52.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
53.•
go back to reference 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. 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.
Metadata
Title
Palliative and End-of-Life Care in Myelodysplastic Syndromes
Authors
Myles Nickolich
Areej El-Jawahri
Thomas W. LeBlanc
Publication date
01-12-2016
Publisher
Springer US
Published in
Current Hematologic Malignancy Reports / Issue 6/2016
Print ISSN: 1558-8211
Electronic ISSN: 1558-822X
DOI
https://doi.org/10.1007/s11899-016-0352-z

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