• 1
    Cancer Research UK Incidence Statistics(June 2011). http://infocancerresearchukorg/cancerstats/reports/
  • 2
    Sirohi B, Powles R. Epidemiology and outcomes research for MGUS, myeloma and amyloidosis. Eur J Cancer 2006;42:167183.
  • 3
    Sherman AC. Psychosocial adjustment and quality of life among multiple myeloma patients undergoing evaluation for autologous stem cell transplantation. Bone Marrow Transplant 2004;33:95562.
  • 4
    Johnsen AT, Tholstrup D, Petersen MA, Pedersen L, Groenvold M. Health related quality of life in a nationally representative sample of haematological patients. Eur J Haematol 2009;83:13948.
  • 5
    Kvam AK, Fayers P, Hjermstad M, Gulbrandsen N, Wisloff F. Health-related quality of life assessment in randomised controlled trials in multiple myeloma: a critical review of methodology and impact on treatment recommendations. Eur J Haematol 2009;83:27989.
  • 6
    Higginson I, Carr A. Using quality of life measures in the clinical setting. Br Med J 2001;322:1297300.
  • 7
    Bausewein C, Simon ST, Benalia H, Downing J, Mwangi-Powell FN, Daveson BA, Harding R, Higginson IJ. Implementing patient reported outcome measures (PROMs) in palliative care – users’ cry for help. Health Qual Life Outcomes 2011;9:111.
  • 8
    Greenhalgh J. The applications of PROs in clinical practice: what are they, do they work, and why? Qual Life Res 2009;18:11523.
  • 9
    Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, Selby PJ. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol 2004;22:71424.
  • 10
    Gulbrandsen N, Wisloff F, Brinch L, et al. Health-related quality of life in multiple myeloma patients receiving high-dose chemotherapy with autologous blood stem-cell support. Med Oncol 2001;18:6577.
  • 11
    Sherman AC, Simonton S, Latif U, Plante TG, Anaissie EJ. Changes in quality-of-life and psychosocial adjustment among multiple myeloma patients treated with high-dose melphalan and autologous stem cell transplantation. Biol Blood Marrow Transplant 2009;15:1220.
  • 12
    Gruenewald DA, Higginson IJ, Vivat B, Edmonds P, Burman RE. Quality of life measures for the palliative care of people severely affected by multiple sclerosis: a systematic review. Mult Scler 2004;10:690704.
  • 13
    WHOQOL-Group. The World Health Organization quality of life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995;41:14039.
  • 14
    Ferrans CE. Definitions and conceptual models of quality of life. In: Lipscomb J, Gotay CC, Snyder C, eds. Outcomes Assessment in Cancer. Cambridge: Cambridge University Press; 2004:1430.
  • 15
    Hawker S, Payne S, Kerr C, Hardey M, Powell J. Appraising the evidence: reviewing disparate data systematically. Qual Health Res 2002;12:128499.
  • 16
    Andersson I, Ahlberg K, Stockelberg D. Patients’ perceptions of health-related quality of life during the first year after autologous and allogeneic stem cell transplantation. Eur J Cancer Care (Engl) 2011;20:36879.
  • 17
    Andersson I, Hjermstad M, Stockelberg D, Persson LO. Health related quality of life in stem cell transplantation: clinical and psychometric validation of the questionnaire module, high dose chemotherapy (HDC-19). Acta Oncol 2008;47:27586.
  • 18
    Bird L, Arthur A, Niblock T, Stone R, Watson L, Cox K. Rehabilitation programme after stem cell transplantation: randomized controlled trial. J Adv Nurs 2010;66:60716.
  • 19
    Cocks K, Cohen D, Wisloff F, et al. An international field study of the reliability and validity of a disease-specific questionnaire module (the QLQ-MY20) in assessing the quality of life of patients with multiple myeloma. Eur J Cancer 2007;43:16709.
  • 20
    Diez-Campelo M, Perez-Simon JA, Gonzalez-Porras JR, Garcia-Cecilia JM, Salinero M, Caballero MD, Canizo MC, Ocio EM, San Miguel JF. Quality of life assessment in patients undergoing reduced intensity conditioning allogeneic as compared to autologous transplantation: results of a prospective study. Bone Marrow Transplant 2004;34:72938.
  • 21
    Dubois D. Descriptive and prognostic value of patient-reported outcomes: the bortezomib experience in relapsed and refractory multiple myeloma. J Clin Oncol 2006;24:97682.
  • 22
    Frick E, Borasio GD, Zehentner H, Fischer N, Bumeder I. Individual quality of life of patients undergoing autologous peripheral blood stem cell transplantation. Psychooncology 2004;13:11625.
  • 23
    Frodin U, Borjeson S, Lyth J, Lotfi K. A prospective evaluation of patients' health-related quality of life during auto-SCT: a 3-year follow-up. Bone Marrow Transplant 2011;46:134552.
  • 24
    Gimsing P, Carlson K, Turesson I, et al. Effect of pamidronate 30 mg versus 90 mg on physical function in patients with newly diagnosed multiple myeloma (Nordic Myeloma Study Group): a double-blind, randomised controlled trial. Lancet Oncol 2010;11:97382.
  • 25
    Gulbrandsen N, Hjermstad MJ, Wisloff F, Nordic Myeloma Study G. Interpretation of quality of life scores in multiple myeloma by comparison with a reference population and assessment of the clinical importance of score differences. Eur J Haematol 2004;72:17280.
  • 26
    Hacker E, Ferrans C, Verlen E. Fatigue and physical activity in patients undergoing hematopoietic stem cell transplant. Oncol Nurs Forum 2006;33:61424.
  • 27
    Harder H, Duivenvoorden HJ, van Gool AR, Cornelissen JJ, van den Bent MJ. Neurocognitive functions and quality of life in haematological patients receiving haematopoietic stem cell grafts: a one-year follow-up pilot study. J Clin Exp Neuropsychol 2006;28:28393.
  • 28
    Hensel M, Egerer G, Schneeweiss A, Goldschmidt H, Ho AD. Quality of life and rehabilitation in social and professional life after autologous stem cell transplantation. Ann Oncol 2002;13:20917.
  • 29
    Imataki O, Nakajima K, Inoue N, Tamai Y, Kawakami K. Evaluation of QOL for stem cell transplantation recipients by SF-36 and FACT-BMT: preliminary results of FACT-BMT for Japanese patients. Gan To Kagaku Ryoho 2010;37:84751.
  • 30
    Iversen PO, Wisloff F, Gulbrandsen N. Reduced nutritional status among multiple myeloma patients during treatment with high-dose chemotherapy and autologous stem cell support. Clin Nutr 2010;29:48891.
  • 31
    Knols RH, De Bruin ED, Uebelhart D, Aufdemkampe G, Schanz U, Stenner-Liewen F, Hitz F, Taverna C, Aaronson NK. Effects of an outpatient physical exercise program on hematopoietic stem-cell transplantation recipients: a randomized clinical trial. Bone Marrow Transplant 2011;46:124555.
  • 32
    Kvam AK, Fayers P, Wisloff F. What changes in health-related quality of life matter to multiple myeloma patients? A prospective study Eur J Haematol 2010;84:34553.
  • 33
    Kvam AK, Fayers PM, Wisloff F. Responsiveness and minimal important score differences in quality-of-life questionnaires: a comparison of the EORTC QLQ-C30 cancer-specific questionnaire to the generic utility questionnaires EQ-5D and 15D in patients with multiple myeloma. Eur J Haematol 2011;87:3307.
  • 34
    Kvam AK, Wisloff F, Fayers PM. Minimal important differences and response shift in health-related quality of life; a longitudinal study in patients with multiple myeloma. Health Qual Life Outcomes 2010;8:79.
  • 35
    Lee SJ, Richardson PG, Sonneveld P, et al. Bortezomib is associated with better health-related quality of life than high-dose dexamethasone in patients with relapsed multiple myeloma: results from the APEX study. Br J Haematol 2008;143:5119.
  • 36
    Littlewood TJ, Kallich JD, San Miguel J, Hendricks L, Hedenus M. Efficacy of darbepoetin alfa in alleviating fatigue and the effect of fatigue on quality of life in anemic patients with lymphoproliferative malignancies. J Pain Symptom Manage 2006;31:31726.
  • 37
    Molassiotis A, Wilson B, Blair S, Howe T, Cavet J. Unmet supportive care needs, psychological well-being and quality of life in patients living with multiple myeloma and their partners. Psychooncology 2011;20:8897.
  • 38
    Osterborg A, Brandberg Y, Molostova V, Iosava G, Abdulkadyrov K, Hedenus M, Messinger D. Randomized, double-blind, placebo-controlled trial of recombinant human erythropoietin, epoetin beta, in hematologic malignancies. J Clin Oncol 2002;20:248694.
  • 39
    Ringdal K, Ringdal GI, Kaasa S, Bjordal K, Wisloff F, Sundstrom S, Hjermstad MJ. Assessing the consistency of psychometric properties of the HRQoL scales within the EORTC QLQ-C30 across populations by means of the Mokken Scaling Model. Qual Life Res 1999;8:2543.
  • 40
    Sherman AC, Coleman EA, Griffith K, Simonton S, Hine RJ, Cromer J, Latif U, Farley H, Garcia R, Anaissie EJ. Use of a supportive care team for screening and preemptive intervention among multiple myeloma patients receiving stem cell transplantation. Support Care Cancer 2003;11:56874.
  • 41
    Sirohi B, Powles R, Lawrence D, Treleaven J, Kulkarni S, Leary A, Rudin C, Horton C, Morgan G. An open, randomized, controlled, phase II, single centre, two-period cross-over study to compare the quality of life and toxicity experienced on PEG interferon with interferon-alpha2b in patients with multiple myeloma maintained on a steady dose of interferon-alpha2b. Ann Oncol 2007;18:138894.
  • 42
    Stalfelt AM, Wadman B. Assessing quality of life in leukemia: presentation of an instrument for assessing quality of life in patients with blood malignancies. Qual Assur Health Care 1993;5:20111.
  • 43
    Stead ML, Brown JM, Velikova G, Kaasa S, Wisloff F, Child JA, Hippe E, Hjorth M, Sezer O, Selby P. Development of an EORTC questionnaire module to be used in health-related quality-of-life assessment for patients with multiple myeloma. European Organization for Research and Treatment of Cancer Study Group on Quality of Life. Br J Haematol 1999;104:60511.
  • 44
    Strasser-Weippl K, Ludwig H. Psychosocial QOL is an independent predictor of overall survival in newly diagnosed patients with multiple myeloma. Eur J Haematol 2008;81:3749.
  • 45
    Uyl-de Groot CA, Buijt I, Gloudemans IJM, Ossenkoppele GJ, Berg HP, Huijgens PC. Health related quality of life in patients with multiple myeloma undergoing a double transplantation. Eur J Haematol 2005;74:13643.
  • 46
    Viala M, Bhakar AL, La Loge C, van de Velde H, Esseltine D, Chang M, Dhawan R, Dubois D. Patient-reported outcomes helped predict survival in multiple myeloma using partial least squares analysis. J Clin Epidemiol 2007;60:6709.e3.
  • 47
    Wettergren L, Sprangers M, Björkholm M, Langius-Eklöf A. Quality of life before and one year following stem cell transplantation using an individualized and a standardized instrument. Psychooncology 2008;17:33847.
  • 48
    Wilson RW, Jacobsen PB, Fields KK. Pilot study of a home-based aerobic exercise program for sedentary cancer survivors treated with hematopoietic stem cell transplantation. Bone Marrow Transplant 2005;35:7217.
  • 49
    Wisloff F, Eika S, Hippe E, Hjorth M, Holmberg E, Kaasa S, Palva I, Westin J. Measurement of health-related quality of life in multiple myeloma. Nordic Myeloma Study Group. Br J Haematol 1996;92:60413.
  • 50
    Wisloff F, Gulbrandsen N, Hjorth M, Lenhoff S, Fayers P. Quality of life may be affected more by disease parameters and response to therapy than by haemoglobin changes. Eur J Haematol 2005;75:2938.
  • 51
    Wisloff F, Hjorth M. Health-related quality of life assessed before and during chemotherapy predicts for survival in multiple myeloma. Nordic Myeloma Study Group. Br J Haematol 1997;97:2937.
  • 52
    Dahan JF, Auerbach CF. A qualitative study of the trauma and posttraumatic growth of multiple myeloma patients treated with peripheral blood stem cell transplant. Palliat Support Care 2006;4:36587.
  • 53
    Vlossak D, Fitch M. Multiple myeloma: the patient's perspecive. Can Oncol Nurs J 2008;18:14151.
  • 54
    Molassiotis A, Wilson B, Blair S, Howe T, Cavet J. Living with multiple myeloma: experiences of patients and their informal caregivers. Support Care Cancer 2011;19:10111.
  • 55
    Potrata B, Cavet J, Blair S, Howe T, Molassiotis A. Understanding distress and distressing experiences in patients living with multiple myeloma: an exploratory study. Psychooncology 2011;20:12734.
  • 56
    Maher K, De Vries K. An exploration of the lived experiences of individuals with relapsed Multiple Myeloma. Eur J Cancer Care (Engl) 2011;20:26775.
  • 57
    Kelly M, Dowling M. Patients' lived experience of myeloma. Nurs Stand 2011;25:3844.
  • 58
    Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med 2009;151:2649.
  • 59
    Hjermstad M, Holte H, Evensen S, Fayers P, Kaasa S. Do patients who are treated with stem cell transplantation have a health-related quality of life comparable to the general population after 1 year? Bone Marrow Transplant 1999;24:9118.
  • 60
    Stalfelt AM, Zettervall O. Quality of life in young patients with chronic myelocytic leukaemia during intensive treatment including interferon. Leuk Res 1997;21:77583.
  • 61
    Farquhar M, Ewing G, Higginson IJ, Booth S. The experience of using the SEIQoL-DW with patients with advanced chronic obstructive pulmonary disease (COPD): issues of process and outcome. Qual Life Res 2010;19:61929.
  • 62
    Hall S, Opio D, Dodd RH, Higginson IJ. Assessing quality-of-life in older people in care homes. Age Ageing 2011;15.
  • 63
    Gotay CC. Trial-related quality of life: using quality of life assessment to distinguish among cancer therapies. J Nat Cancer Inst Monogr 1996;20:16.
  • 64
    Streiner D, Norman G. Criterion Validation in Health measurement Scales: a Practical Guide to Their Developement and Use, 4th edn. Oxford: Oxford Medical Publications, 2008:254.