Malcovati L, Hellstrom-Lindberg E, Bowen D et al (2013) Diagnosis and treatment of primary myelodysplastic syndromes in adults: recommendations from the European LeukemiaNet. Blood 122:2943–2964. https://doi.org/10.1182/blood-2013-03-492884
CAS
Article
PubMed
PubMed Central
Google Scholar
Santini V (2015) Anemia as the main manifestation of myelodysplastic syndromes. Semin Hematol 52:348–356. https://doi.org/10.1053/j.seminhematol.2015.06.002
Article
PubMed
Google Scholar
Abel GA, Buckstein R (2016) Integrating frailty, comorbidity, and quality of life in the management of myelodysplastic syndromes. Am Soc Clin Oncol Educ Book 35:e337-344. https://doi.org/10.1200/EDBK_158639
Article
PubMed
Google Scholar
de Swart L, Smith A, Johnston TW et al (2015) Validation of the revised international prognostic scoring system (IPSS-R) in patients with lower-risk myelodysplastic syndromes: a report from the prospective European LeukaemiaNet MDS (EUMDS) registry. Br J Haematol 170:372–383. https://doi.org/10.1111/bjh.13450
CAS
Article
PubMed
Google Scholar
Stauder R, Yu G, Koinig KA et al (2018) Health-related quality of life in lower-risk MDS patients compared with age- and sex-matched reference populations: a European LeukemiaNet study. Leukemia 32:1380–1392. https://doi.org/10.1038/s41375-018-0089-x
Article
PubMed
PubMed Central
Google Scholar
Greenberg P, Cox C, LeBeau MM et al (1997) International scoring system for evaluating prognosis in myelodysplastic syndromes. Blood 89:2079–2088
CAS
Article
PubMed
Google Scholar
Greenberg PL, Tuechler H, Schanz J et al (2012) Revised international prognostic scoring system for myelodysplastic syndromes. Blood 120:2454–2465. https://doi.org/10.1182/blood-2012-03-420489
CAS
Article
PubMed
PubMed Central
Google Scholar
Montalban-Bravo G, Garcia-Manero G (2018) Myelodysplastic syndromes: 2018 update on diagnosis, risk-stratification and management. Am J Hematol 93:129–147. https://doi.org/10.1002/ajh.24930
Article
PubMed
Google Scholar
Rochau U, Stojkov I, Conrads-Frank A et al (2020) Development of a core outcome set for myelodysplastic syndromes - a Delphi study from the EUMDS Registry Group. Br J Haematol 191:405–417. https://doi.org/10.1111/bjh.16654
Article
PubMed
PubMed Central
Google Scholar
Wouters HJ, van der Klauw MM, de Witte T et al (2019) Association of anemia with health-related quality of life and survival: a large population-based cohort study. Haematologica 104:468–476. https://doi.org/10.3324/haematol.2018.195552
CAS
Article
PubMed
PubMed Central
Google Scholar
Platzbecker U, Hofbauer LC, Ehninger G, Hölig K (2012) The clinical, quality of life, and economic consequences of chronic anemia and transfusion support in patients with myelodysplastic syndromes. Leuk Res 36:525–536. https://doi.org/10.1016/j.leukres.2012.01.006
Article
PubMed
Google Scholar
Steensma DP, Heptinstall KV, Johnson VM et al (2008) 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 32:691–698. https://doi.org/10.1016/j.leukres.2007.10.015
Article
PubMed
Google Scholar
Efficace F, Gaidano G, Breccia M et al (2015) Prevalence, severity and correlates of fatigue in newly diagnosed patients with myelodysplastic syndromes. Br J Haematol 168:361–370. https://doi.org/10.1111/bjh.13138
Article
PubMed
Google Scholar
Oliva EN, Dimitrov BD, Benedetto F, D’Angelo A, Nobile F (2005) Hemoglobin level threshold for cardiac remodeling and quality of life in myelodysplastic syndrome. Leuk Res 29:1217–1219. https://doi.org/10.1016/j.leukres.2005.03.004
CAS
Article
PubMed
Google Scholar
Jansen AJ, Essink-Bot ML, Beckers EA, Hop WC, Schipperus MR, Van Rhenen DJ (2003) Quality of life measurement in patients with transfusion-dependent myelodysplastic syndromes. Br J Haematol 121:270–274. https://doi.org/10.1046/j.1365-2141.2003.04272.x
CAS
Article
PubMed
Google 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 104:321–327. https://doi.org/10.1182/blood-2003-07-2252
CAS
Article
PubMed
Google Scholar
Platzbecker U, Symeonidis A, Oliva EN et al (2017) A phase 3 randomized placebo-controlled trial of darbepoetin alfa in patients with anemia and lower-risk myelodysplastic syndromes. Leukemia 31:1944–1950. https://doi.org/10.1038/leu.2017.192
CAS
Article
PubMed
PubMed Central
Google Scholar
Stauder R, Augschoell J, Hamaker ME, Koinig KA (2020) Malnutrition in older patients with hematological malignancies at initial diagnosis - association with impairments in health status, systemic inflammation and adverse outcome. Hemasphere 4(1):e332. https://doi.org/10.1097/HS9.0000000000000332
Article
PubMed
PubMed Central
Google Scholar
Scholtens S, Smidt N, Swertz MA et al (2015) Cohort Profile: LifeLines, a three-generation cohort study and biobank. Int J Epidemiol 44:1172–1180. https://doi.org/10.1093/ije/dyu229
Article
PubMed
Google Scholar
Stolk RP, Rosmalen JG, Postma DS et al (2008) Universal risk factors for multifactorial diseases: LifeLines: a three-generation population-based study. Eur J Epidemiol 23:67–74. https://doi.org/10.1007/s10654-007-9204-4
Article
PubMed
Google Scholar
Sorror ML, Maris MB, Storb R et al (2005) Hematopoietic cell transplantation (HCT)-specific comorbidity index: a new tool for risk assessment before allogeneic HCT. Blood 106:2912–2919. https://doi.org/10.1182/blood-2005-05-2004
CAS
Article
PubMed
PubMed Central
Google Scholar
Sorror ML, Sandmaier BM, Storer BE et al (2007) Comorbidity and disease status based risk stratification of outcomes among patients with acute myeloid leukemia or myelodysplasia receiving allogeneic hematopoietic cell transplantation. J Clin Oncol 25:4246–4254. https://doi.org/10.1200/JCO.2006.09.7865
Article
PubMed
Google Scholar
Della Porta MG, Malcovati L, Strupp C et al (2010) Risk stratification based on both disease status and extra-hematologic comorbidities in patients with myelodysplastic syndrome. Haematologica 96:441–449. https://doi.org/10.3324/haematol.2010.033506
Article
PubMed
PubMed Central
Google Scholar
Klijs B, Scholtens S, Mandemakers JJ, Snieder H, Stolk RP, Smidt N (2015) Representativeness of the LifeLines Cohort Study. PLoS ONE 10(9):e0137203. https://doi.org/10.1371/journal.pone.0137203
CAS
Article
PubMed
PubMed Central
Google Scholar
Brooks R (1996) EuroQol: the current state of play. Health Policy 37:53–72. https://doi.org/10.1016/0168-8510(96)00822-6
CAS
Article
PubMed
Google Scholar
Greiner W, Weijnen T, Nieuwenhuizen M et al (2003) A single European currency for EQ-5D health states. Results from a six-country study. Eur J Health Econ 4:222–231. https://doi.org/10.1007/s10198-003-0182-5
Article
PubMed
Google Scholar
Dolan P (1997) Modeling Valuations for EuroQol Health States. Med Care 35:1095–1111. https://doi.org/10.1097/00005650-199711000-00002
CAS
Article
PubMed
Google Scholar
VanderZee KI, Sanderman R, Heyink JW, de Haes H (1996) Psychometric qualities of the RAND 36-Item Health Survey 1.0: a multidimensional measure of general health status. Int J Behav Med 3:104–122. https://doi.org/10.1207/s15327558ijbm0302_2
CAS
Article
PubMed
Google Scholar
Ware J, Kosinski M, Keller SD (1996) A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care 34:220–233. https://doi.org/10.1097/00005650-199603000-00003
Article
PubMed
Google Scholar
Rowen D, Brazier J, Roberts J (2009) Mapping SF-36 onto the EQ-5D index: how reliable is the relationship? Health Qual Life Outcomes 7:27. https://doi.org/10.1186/1477-7525-7-27
Article
PubMed
PubMed Central
Google Scholar
Gray AM, Rivero-Arias O, Clarke PM (2006) Estimating the association between SF-12 responses and EQ-5D utility values by response mapping. Med Decis Making 26:18–29. https://doi.org/10.1177/0272989X05284108
Article
PubMed
Google Scholar
Blanc B, Finch CA, Hallberg L et al (1968) Nutritional anaemias. Report of a WHO scientific group. World Health Organ Tech Rep Ser 405:5–37
Google Scholar
Cox E, Martin BC, Van Staa T et al (2009) Good research practices for comparative effectiveness research: approaches to mitigate bias and confounding in the design of nonrandomized studies of treatment effects using secondary data sources: the international society for pharmacoeconomics and outcomes research good research practices for retrospective database analysis task force report–part II. Value Health 12:1053–1061. https://doi.org/10.1111/j.1524-4733.2009.00601.x
Article
PubMed
Google Scholar
Efficace F, Cottone F, Oswald LB et al (2020) The IPSS-R more accurately captures fatigue severity of newly diagnosed patients with myelodysplastic syndromes compared with the IPSS index. Leukemia 34:2451–2459. https://doi.org/10.1038/s41375-020-0746-8
Article
PubMed
PubMed Central
Google Scholar
Vestergaard S, Nayfield SG, Patel KV et al (2009) Fatigue in a representative population of older persons and its association with functional impairment, functional limitation, and disability. J Gerontol A Biol Sci Med Sci 64(1):76–82. https://doi.org/10.1093/gerona/gln017
Article
PubMed
Google Scholar
Linden W, Vodermaier A, Mackenzie R, Greig D (2012) Anxiety and depression after cancer diagnosis: prevalence rates by cancer type, gender, and age. J Affect Disord 141:343–351. https://doi.org/10.1016/j.jad.2012.03.025
Article
PubMed
Google Scholar
Stauder R, Lambert J, Desruol-Allardin S et al (2020) Patient-reported outcome measures in studies of myelodysplastic syndromes and acute myeloid leukemia: literature review and landscape analysis. Eur J Haematol 104:476–487. https://doi.org/10.1111/ejh.13389
Article
PubMed
PubMed Central
Google Scholar
Hellström-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 on quality of life. Br J Haematol 120:1037–1046. https://doi.org/10.1046/j.1365-2141.2003.04153.x
Article
PubMed
Google Scholar
Banerjee T, Calvi LM, Becker MW, Liesveld JL (2019) Flaming and fanning: the spectrum of inflammatory influences in myelodysplastic syndromes. Blood Rev 36:57–69. https://doi.org/10.1016/j.blre.2019.04.004
Article
PubMed
PubMed Central
Google Scholar
Shi X, Zheng Y, Xu L, Cao C, Dong B, Chen X (2019) The inflammatory cytokine profile of myelodysplastic syndromes: a meta-analysis. Medicine (Baltimore) 98(22):e15844. https://doi.org/10.1097/MD.0000000000015844
Article
Google Scholar
Cohen HJ, Pieper CF, Harris T, Rao KM, Currie MS (1997) The association of plasma IL-6 levels with functional disability in community-dwelling elderly. J Gerontol A Biol Sci Med Sci 52:M201-208. https://doi.org/10.1093/gerona/52a.4.m201
CAS
Article
PubMed
Google Scholar
Christian LM, Glaser R, Porter K, Malarkey WB, Beversdorf D, Kiecolt-Glaser JK (2011) Poorer self-rated health is associated with elevated inflammatory markers among older adults. Psychoneuroendocrinology 36:1495–1504. https://doi.org/10.1016/j.psyneuen.2011.04.003
CAS
Article
PubMed
PubMed Central
Google Scholar
Tait JL, Duckham RL, Milte CM, Main LC, Daly RM (2019) Associations between inflammatory and neurological markers with quality of life and well-being in older adults. Exp Gerontol 125:110662. https://doi.org/10.1016/j.exger.2019.110662
CAS
Article
PubMed
Google Scholar
Nowakowski AC (2014) Chronic inflammation and quality of life in older adults: a cross-sectional study using biomarkers to predict emotional and relational outcomes. Health Qual Life Outcomes 12:141. https://doi.org/10.1186/s12955-014-0141-0
Article
PubMed
PubMed Central
Google Scholar
Jylhä M, Volpato S, Guralnik JM (2006) Self-rated health showed a graded association with frequently used biomarkers in a large population sample. J Clin Epidemiol 59:465–471. https://doi.org/10.1016/j.jclinepi.2005.12.004
Article
PubMed
Google Scholar
Meyers CA, Albitar M, Estey E (2005) Cognitive impairment, fatigue, and cytokine levels in patients with acute myelogenous leukemia or myelodysplastic syndrome. Cancer 104:788–793. https://doi.org/10.1002/cncr.21234
CAS
Article
PubMed
Google Scholar
Cluzeau T, McGraw KL, Irvine B et al (2017) Pro-inflammatory proteins S100A9 and tumor necrosis factor-α suppress erythropoietin elaboration in myelodysplastic syndromes. Haematologica 102:2015–2020. https://doi.org/10.3324/haematol.2016.158857
CAS
Article
PubMed
PubMed Central
Google Scholar
Kotla V, Goel S, Nischal S et al (2009) Mechanism of action of lenalidomide in hematological malignancies. J Hematol Oncol 2:36. https://doi.org/10.1186/1756-8722-2-36
CAS
Article
PubMed
PubMed Central
Google Scholar
Santini V, Almeida A, Giagounidis A et al (2018) The effect of lenalidomide on health-related quality of life in patients with lower-risk non-del(5q) myelodysplastic syndromes: results from the MDS-005 study. Clin Lymphoma Myeloma Leuk 18:136-144.e7. https://doi.org/10.1186/1756-8722-2-36
CAS
Article
PubMed
Google Scholar
Revicki DA, Brandenburg NA, Muus P, Yu R, Knight R, Fenaux P (2013) Health-related quality of life outcomes of lenalidomide in transfusion-dependent patients with Low- or Intermediate-1-risk myelodysplastic syndromes with a chromosome 5q deletion: results from a randomized clinical trial. Leuk Res 37:259–265. https://doi.org/10.1016/j.leukres.2012.11.017
CAS
Article
PubMed
Google Scholar
Fenaux P, Giagounidis A, Selleslag D et al (2011) A randomized phase 3 study of lenalidomide versus placebo in RBC transfusion-dependent patients with Low-/Intermediate-1-risk myelodysplastic syndromes with del5q. Blood 118:3765–3776. https://doi.org/10.1182/blood-2011-01-330126
CAS
Article
PubMed
Google Scholar
Ivy KS, Brent Ferrell Jr P (2018) Disordered immune regulation and its therapeutic targeting in myelodysplastic syndromes. Curr Hematol Malig Rep 13:244–255. https://doi.org/10.1007/s11899-018-0463-9
Article
PubMed
PubMed Central
Google Scholar
Schwartz RM, Ornstein KA, Liu B, Alpert N, Bevilacqua KG, Taioli E (2019) Change in quality of life after a cancer diagnosis among a nationally representative cohort of older adults in the US. Cancer Invest 37:299–310. https://doi.org/10.1080/07357907.2019.1645160
CAS
Article
PubMed
PubMed Central
Google Scholar
Reeve BB, Potosky AL, Smith AW et al (2009) Impact of cancer on health-related quality of life of older Americans. J Natl Cancer Inst 101(12):860–868. https://doi.org/10.1093/jnci/djp123
Article
PubMed
PubMed Central
Google Scholar
Haapanen N, Miilunpalo S, Pasanen M, Oja P, Vuori I (1997) Agreement between questionnaire data and medical records of chronic diseases in middle-aged and elderly Finnish men and women. Am J Epidemiol 145:762–769. https://doi.org/10.1093/aje/145.8.762
CAS
Article
PubMed
Google Scholar
Bergmann MM, Calle EE, Mervis CA, Miracle-McMahill HL, Thun MJ, Heath CW (1998) Validity of self-reported cancers in a prospective cohort study in comparison with data from state cancer registries. Am J Epidemiol 147(6):556–562. https://doi.org/10.1093/oxfordjournals.aje.a009487
CAS
Article
PubMed
Google Scholar
Okura Y, Urban LH, Mahoney DW, Jacobsen SJ, Rodeheffer RJ (2004) Agreement between self-report questionnaires and medical record data was substantial for diabetes, hypertension, myocardial infarction and stroke but not for heart failure. J Clin Epidemiol 57(10):1096–1103. https://doi.org/10.1016/j.jclinepi.2004.04.005
Article
PubMed
Google Scholar
Hernán MA, Robins JM (2020) CausalInference: What If. Chapman&Hall/CRC, BocaRaton
Google Scholar