References

American Cancer Society. 2018. https://tinyurl.com/kyghykk

Anticancer Fund and the European Society for Medical Oncology. 2017. https://tinyurl.com/yegfx27n

Barber FD, Mullen EC Multiple myeloma: the role of the primary care nurse practitioner. J Nurse Pract.. 2017; 13:(5)328-335 https://doi.org/10.1016/j.nurpra.2016.12.023

Baz R, Lin HM, Hui AM Development of a conceptual model to illustrate the impact of multiple myeloma and its treatment on health-related quality of life. Support Care Cancer.. 2015; 23:(9)2789-2797 https://doi.org/10.1007/s00520-015-2644-6

Binner M, Ross D, Browner I Chemotherapy-induced peripheral neuropathy: assessment of oncology nurses' knowledge and practice. Oncol Nurs Forum.. 2011; 38:(4)448-454 https://doi.org/10.1188/11.ONF.448-454

Boland EG, Boland JW, Ezaydi Y, Greenfield DM, Ahmedzai SH, Snowden JA Holistic needs assessment in advanced, intensively treated multiple myeloma patients. Support Care Cancer.. 2014; 22:(10)2615-2620 https://doi.org/10.1007/s00520-014-2231-2

Brandenbarg D, Berendsen AJ, de Bock GH Patients' expectations and preferences regarding cancer follow-up care. Maturitas.. 2017; 105:58-63 https://doi.org/10.1016/j.maturitas.2017.07.001

Cancer.net (American Society of Clinical Oncology). 2019. https://tinyurl.com/yjpd2adr

Cancer Research UK. 2020. https://tinyurl.com/yzkho7vo

Cartwright LA, Dumenci L, Siminoff LA, Matsuyama RK Cancer patients' understanding of prognostic information. J Cancer Educ.. 2014; 29:(2)311-317 https://doi.org/10.1007/s13187-013-0603-9

Colson K Treatment-related symptom management in patients with multiple myeloma: a review. Support Care Cancer.. 2015; 23:(5)1431-1445 https://doi.org/10.1007/s00520-014-2552-1

Colaizzi PF Psychological research as the phenomenologist views it. In: Valle RS, King M New York: Oxford University Press; 1978

Coon SK, McBride-Wilson J, Coleman EA Back to basics: assessment, communication, caring, and follow-up a lesson from a couple's journey with multiple myeloma. Clin J Oncol Nurs.. 2007; 11:(6)825-829 https://doi.org/10.1188/07.CJON.825-829

Cormican O, Dowling M Managing relapsed myeloma: the views of patients, nurses and doctors. Eur J Oncol Nurs.. 2016; 23:51-58 https://doi.org/10.1016/j.ejon.2016.04.003

Department of Health. 2017. https://tinyurl.com/yepq4tbx

Dowling M, Kelly M, Meenaghan T Multiple myeloma: managing a complex blood cancer. Br J Nurs.. 2016; 25:(16)S18-S28 https://doi.org/10.12968/bjon.2016.25.S18

Drury A, Payne S, Brady AM Cancer survivorship: advancing the concept in the context of colorectal cancer. Eur J Oncol Nurs.. 2017; 29:135-147 https://doi.org/10.1016/j.ejon.2017.06.006

Drury A, Payne S, Brady AM Identifying associations between quality of life outcomes and healthcare-related variables among colorectal cancer survivors: a cross-sectional survey study. Int J Nurs Stud.. 2020; 101 https://doi.org/10.1016/j.ijnurstu.2019.103434

El-Jawahri AR, Vandusen HB, Traeger LN Quality of life and mood predict posttraumatic stress disorder after hematopoietic stem cell transplantation. Cancer.. 2016; 122:(5)806-812 https://doi.org/10.1002/cncr.29818

Holz L, Ruhl J Using distress screening assessments to improve quality care. Australian Journal of Cancer Nursing. 2016; 17:(2)16-20

Hulin C, Hansen T, Heron L Living with the burden of relapse in multiple myeloma from the patient and physician perspective. Leuk Res.. 2017; 59:75-84 https://doi.org/10.1016/j.leukres.2017.05.019

Husson O, Thong MSY, Mols F, Oerlemans S, Kaptein AA, van de Poll-Franse LV Illness perceptions in cancer survivors: what is the role of information provision?. Psychooncology. 2013; 22:(3)490-498 https://doi.org/10.1002/pon.3042

Karlou C, Papathanassoglou E, Patiraki E Caring behaviours in cancer care in Greece. Comparison of patients', their caregivers' and nurses' perceptions. Eur J Oncol Nurs.. 2015; 19:(3)244-250 https://doi.org/10.1016/j.ejon.2014.11.005

Kariyawasan CC, Hughes DA, Jayatillake MM, Mehta AB Multiple myeloma: causes and consequences of delay in diagnosis. QJM.. 2007; 100:(10)635-640 https://doi.org/10.1093/qjmed/hcm077

Kelly M, Meenaghan T, Dowling M Myeloma: making sense of a complex blood cancer. Br J Nurs.. 2010; 19:(22)1415-1421

Kelly M, Dowling M Patients' lived experience of myeloma. Nurs Stand.. 2011; 25:(28)38-44

Koutsopoulou S, Papathanassoglou EDE, Katapodi MC, Patiraki EI A critical review of the evidence for nurses as information providers to cancer patients. J Clin Nurs.. 2010; 19:(5-6)749-765

Lamers J, Hartmann M, Goldschmidt H, Brechtel A, Hillengass J, Herzog W Psychosocial support in patients with multiple myeloma at time of diagnosis: who wants what?. Psychooncology. 2013; 22:(10)2313-20 https://doi.org/10.1002/pon.3284

Laurant M, van der Biezen M, Wijers N, Watananirun K, Kontopantelis E, van Vught AJAH Nurses as substitutes for doctors in primary care. Cochrane Database Syst Rev.. 2018; 7:(7) https://doi.org/10.1002/14651858.CD001271.pub3

Lopez ALJ, Butow PN, Philp S Age-related supportive care needs of women with gynaecological cancer: A qualitative exploration. Eur J Cancer Care (Engl).. 2019; 28:(4) https://doi.org/10.1111/ecc.13070

Loughery J, Woodgate R Supportive care experiences of rural women living with breast cancer: an interpretive descriptive qualitative study. Canadian Oncology Nursing Journal. 2019; 29:(3)170-176

Maher K, De Vries K An exploration of the lived experiences of individuals with relapsed multiple myeloma. Eur J Cancer Care (Engl).. 2011; 20:(2)267-275 https://doi.org/10.1111/j.1365-2354.2010.01234.x

Nurses in advanced roles in primary care: Policy levers for implementation. 2017. https://tinyurl.com/ydvmzl8s

McGrath P, Holewa H The emotional consequences of corticosteroid use in hematology: preliminary findings. J Psychosoc Oncol.. 2010; 28:(4)335-350 https://doi.org/10.1080/07347332.2010.485246

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.. 2011a; 20:(1)88-97

Molassiotis A, Wilson B, Blair S, Howe T, Cavet J Living with multiple myeloma: experiences of patients and their informal caregivers. Support Care Cancer.. 2011b; 19:(1)101-111 https://doi.org/10.1007/s00520-009-0793-1

Monterosso L, Taylor K, Platt V Living with multiple myeloma: a focus group study of unmet needs and preferences for survivorship care. J Patient Exp.. 2018; 5:(1)6-15 https://doi.org/10.1177/2374373517715011

Moreau P, San Miguel J, Sonneveld P Multiple myeloma: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol.. 2017; 28:(Suppl 4)iv52-iv61 https://doi.org/10.1093/annonc/mdx096

Morawska M, Grzasko N, Kostyra M, Wojciechowicz J, Hus M Therapy-related peripheral neuropathy in multiple myeloma patients. Hematol Oncol.. 2015; 33:(4)113-119 https://doi.org/10.1002/hon.2149

Multiple Myeloma Ireland. 2017. https://tinyurl.com/wsc5qpe

National Cancer Registry Ireland. 2018. https://tinyurl.com/ygb4w8jj

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:(2)127-134

Rajkumar SV, Kumar S Multiple myeloma: diagnosis and treatment. Mayo Clin Proc.. 2016; 91:(1)101-19 https://doi.org/10.1016/j.mayocp.2015.11.007

Sloot S, Boland J, Snowden JA Side effects of analgesia may significantly reduce quality of life in symptomatic multiple myeloma: a cross-sectional prevalence study. Support Care Cancer.. 2015; 23:(3)671-678 https://doi.org/10.1007/s00520-014-2358-1

Snowden JA, Greenfield DM, Bird JM Guidelines for screening and management of late and long-term consequences of myeloma and its treatment. Br J Haematol.. 2017; 176:(6)888-907 https://doi.org/10.1111/bjh.14514

Sonneveld P, Verelst SG, Lewis P Review of health-related quality of life data in multiple myeloma patients treated with novel agents. Leukemia.. 2013; 27:(10)1959-1969 https://doi.org/10.1038/leu.2013

Stephens M, McKenzie H, Jordens CFC The work of living with a rare cancer: multiple myeloma. J Adv Nurs.. 2014; 70:(12)2800-2809 https://doi.org/10.1111/jan.12430

Streuber HJ, Carpenter DRPhiladelphia (PA): Wolters Kluwer; 2011

Tripaldi C Sexual function after stoma formation in women with colorectal cancer. Br J Nurs.. 2019; 28:(16)S4-S15 https://doi.org/10.12968/bjon.2019.28.16.S4

Wagland K, Levesque JV, Connors J Disease isolation: the challenges faced by mothers living with multiple myeloma in rural and regional Australia. Eur J Oncol Nurs.. 2015; 19:(2)148-153 https://doi.org/10.1016/j.ejon.2014

Patients' experiences of living with multiple myeloma

23 January 2020

Professional

02 January 2020

Volume 29 · Issue 2

ISSN (print): 0966-0461

ISSN (online): 2052-2819

Abstract

Background:

Multiple myeloma is a B-cell haematological malignancy characterised by uncontrolled plasma cell proliferation. Patients with the disease often undergo periods of remission followed by multiple relapses. Understanding patients' experience of living with this chronic condition is key to providing effective patient-centred care.

Aims:

This qualitative descriptive study explored the experiences of patients living with multiple myeloma.

Methods:

A purposive sample of 6 patients was used. Data were collected using in-depth unstructured interviews and analysed using Colaizzi's (1978) thematic framework.

Findings:

The emergent themes included: information and communication; treatment and symptom burden; the importance of support from family/friends and professional help; psychosocial elements of survivorship.

Conclusion:

The complex symptoms of multiple myeloma need to be treated holistically to manage the unpredictable nature of this disease.

Multiple myeloma is a malignant proliferation of plasma cells. Its clinical manifestations include bone pain due to lytic lesions (soft spots in the bones that can increase the risks of painful fractures), anaemia, renal insufficiency, hypercalcaemia, immunodeficiency and increased susceptibility to infection (Colson, 2015). Each year about 5700 cases are diagnosed in the UK (Cancer Research UK, 2020), 32 000 cases in the USA (American Cancer Society, 2018), and 352 in the Republic of Ireland (National Cancer Registry Ireland (NCRI), 2018). It is a relapsing-remitting cancer resulting in periods during which symptoms need to be treated, followed by intervals during which treatment is not necessary (Rajkumar and Kumar, 2016; Multiple Myeloma Ireland, 2017).

There are several treatment options for patients diagnosed with multiple myeloma. In most cases, these can induce long intervals without any symptoms of the disease, allowing patients to have a reasonable quality of life. Consequently, multiple myeloma can be considered to be a chronic condition, where the aim of treatment is not to cure the disease but to control its symptoms (Anticancer Fund and the European Society for Medical Oncology, 2017). Survivorship has become a reality for some patients, with the overall survival at 5 years reaching more than 53% (National Cancer Registry Ireland, 2018).

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Multiple myeloma

Patient experience

Oncology nursing

Haematological malignancy