Abstract
Goals of work
The purpose of this study was to explore the experience of living with myeloma after completion of treatments in patients and their informal caregivers.
Patients and methods
Qualitative interviews were carried out with 20 patients living with myeloma and 16 of their informal caregivers (mostly spouses), asking them through semi-structured interviews to talk about the effects of myeloma on their lives, issues and concerns, their supportive care needs and how they were coping in everyday life.
Main results
Key findings indicate the significant impact myeloma has on patients' and caregivers' emotional, role, social and work-related areas of life. While patients seemed less engaged with their illness, their informal caregivers were providing practical and emotional support to patients almost exclusively, often by neglecting their own needs. This increased engagement with the informal caring often led to experiences of a heightened illness burden and difficulties with coping. Both patients and caregivers had significant fears and uncertainty about the future, with myeloma being described as a ‘time bomb’. Both patients and caregivers were concealing stressful situations related to the illness from each other in an effort to protect them, although this resulted in isolation.
Conclusions
While health professionals' attention has been concentrated in helping patients to get through treatments, it is imperative that psychosocial rehabilitation is offered also to those who survive many years after diagnosis and are off treatments. Caregivers are particularly vulnerable to the high demands of caring for myeloma patients, and a more concerted action by health professionals should be directed to them.
Similar content being viewed by others
References
Braun M, Mikulincer M, Rydall A, Walsh A, Rodin G (2007) Hidden morbidity in cancer: spouse caregivers. J Clin Oncol 25:4829–4834
Dahan JF, Auerbach CF (2006) A qualitative study of the trauma and posttraumatic growth of multiple myeloma patients treated with peripheral blood stem cell transplant. Palliat Support Care 4:365–387
Goedendorp MM, Gielissen MF, Verhagen CA, Bleijenberg G (2009) Psychosocial interventions for reducing fatigue during cancer treatment in adults. Cochrane Database Syst Rev 21(1):CD006953
Golant M, Haskins NV (2008) ‘Other cancer survivors’: the impact on family and caregivers. Cancer J 14:420–424
Greipp PR, San Miguel J, Durie BG et al (2005) International staging system for multiple myeloma. J Clin Oncol 23:3412–3420
Gulbrandsen N, Wisloff F, Brinch L, Nordic Myeloma Study Group et al (2001) Health-related quality of life in multiple myeloma patients receiving high-dose chemotherapy with autologous blood stem-cell support. Med Oncol 18:65–77
Gulbrandsen N, Hjermstad MJ, Wilsoff F (2004) 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 72:172–180
International Myeloma Working Group (2003) Criteria for the classification of monoclonal gammopathies, multiple myeloma and related disorders: a report of the International Myeloma Working Group. Br J Haematol 121:749–757
Johnsen AT, Tholstrup D, Petersen MA, Pedersen L, Groenvold M (2009) Health related quality of life in a nationally representative sample of haematological patients. Eur J Haematol 83(2):139–148
Jones LW, Courneya KS, Vallance JK, Ladha AB, Mant MJ, Belch AR, Stewart DA, Reiman T (2004) Association between exercise and quality of life in multiple myeloma cancer survivors. Support Care Cancer 12:780–788
Kangas M, Bovbjerg DH, Montgomery GH (2008) Cancer-related fatigue: a systematic and meta-analytic review of non-pharmacological therapies for cancer patients. Psychol Bull 134:700–741
Kumar SK, Rajkumar SV, Dispenzieri A, Lacy MQ, Hayman SR, Buadi FK, Zeldenrust SR, Dingli D, Russell J, Lust JA, Greipp PR, Kyle RA, Gertz MA (2008) Improved survival in multiple myeloma and the impact of novel therapies. Blood 111:2516–2520
Kyle RA, Rajkumar SV (2008) Multiple myeloma. Blood 111:2962–2972
Lee SJ, Richardson PG, Sonneveld P, Schuster MW, Irwin D, San Miguel JF, Crawford B, Massaro J, Dhawan R, Gupta S, Anderson KC (2008) 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 143:511–519
Miles M, Huberman AM (1994) Qualitative data analysis: an expanded sourcebook, 2nd edn. Sage, Thousand Oaks
McMillan SC, Small BJ, Weitzner M, Schonwetter R, Tittle M, Moody L, Haley WE (2006) Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial. Cancer 106:214–222
Molassiotis A, Wilson B, Blair S, Howe T, Cavet J. Supportive care unmet needs and quality of life in patients living with multiple myeloma and their partners. Psycho-Oncol (in press)
Palumbo A, Bringhen S, Liberati AM, Caravita T, Falcone A, Callea V, Montanaro M, Ria R, Capaldi A, Zambello R, Benevolo G, Derudas D, Dore F, Cavallo F, Gay F, Falco P, Ciccone G, Musto P, Cavo M, Boccadoro M (2008) Oral melphalan, prednisolone and thalidomide in elderly patients with multiple myeloma: updated results of a randomized controlled trial. Blood 112:3107–3114
Papastavrou E, Charalambous A, Tsangari H (2009) Exploring the other side of cancer care: the informal caregiver. Eur J Oncol Nurs 13(2):128–136
Potrata B, Cavet J, Blair S, Howe T, Molassiotis A. ‘Like a sieve’: an exploratory study on cognitive impairments in patients with multiple myeloma. Eur J Cancer Care (in press)
Rajkumar SV, Jacobus S, Callander N, Fonseca R, Vesole D, Williams M, Abonour R, Siegel D, Greipp P (2007) A randomized trial of lenalidomide plus high-dose dexamethasone versus lenalidomide plus low-dose dexamethasone in newly diagnosed multiple myeloma (E4A03): a trial coordinated by the Eastern Cooperative Oncology Group. Blood 110:74, Abstract #31
San Miguel JF, Schlaq R, Khuaqeva NK, Dimopoulos MA, Shpilberg O, Kropff M, Spicka I, Petrucci MT, Palumbo A, Samoilova OS, Dmoszynska A, Abdulkadyrov KM, Schots R, Jiang B, Mateos MV, Anderson KC, Esseltine DL, Liu K, Cakana A, van de Velde H, Richardson PG, VISTA Trial Investigators (2008) Bortezomib plus melphalan and prednisolone for initial treatment of multiple myeloma. New Engl J Med 359:906–917
Sherman AC, Coleman EA, Griffith K, Simonton S, Hine RJ, Cromer J, Latif U, Farley H, Garcia R, Anaissie EJ (2003) Use of a supportive care team for screening and preemptive intervention among multiple myeloma patients receiving stem cell transplantation. Support Care Cancer 11:568–574
Sherman AC, Simonton S, Latif U, Spohn R, Tricot G (2004) Psychosocial adjustment and quality of life among multiple myeloma patients undergoing evaluation for autologous stem cell transplantation. Bone Marrow Transplant 33:955–962
Sherman AC, Simonton S, Latif U, Plante TG, Anaissie EJ (2009) 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 15:12–20
Straus DJ, Testa MA, Sarokhan BJ, Czuczman MS, Tulpule A, Turner RR, Riggs SA (2006) Quality-of-life and health benefits of early treatment of mild anemia: a randomized trial of epoetin alfa in patients receiving chemotherapy for haematological malignancies. Cancer 107:1909–1917
Acknowledgements
We would like to thank all clinicians who have helped us recruit patients in the study, including Dr. Isabel Syndikus, Dr. Patrick Carrington, Dr. David Alderson, Dr. Hussein Baden as well as our steering group members, Mr. David Green, Mr. Tony Webber and Ms. Jo Tomlins, and Lisa Brunton who assisted with data management. The study was funded by a health services research grant (Miriam Hyman research grant) from Myeloma UK.
Conflict of interest
None of the authors has any conflict of interest that could inadvertently influence this work.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Molassiotis, A., Wilson, B., Blair, S. et al. Living with multiple myeloma: experiences of patients and their informal caregivers. Support Care Cancer 19, 101–111 (2011). https://doi.org/10.1007/s00520-009-0793-1
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00520-009-0793-1