Factors associated with quality of life in caregivers of patients with multiple myeloma

QoL in caregivers of multiple myeloma patients



Multiple myeloma, caregiver, quality of life, health care


Background/Aim: Advances in the therapeutic treatment of multiple myeloma have continuously led to better prognoses. However, longer lives for patients include complications due to both potential comorbidities and the possible severe side effects of specific treatments. These issues make caring for such patients exhausting. In this study, we investigated the most important factors that negatively affect the quality of life (QoL) of non-professional caregivers of patients with multiple myeloma (MM).

Methods: This study was a cross-sectional study conducted between March 2023 and August 2023. The caregivers of 144 patients with MM were assessed for inclusion/exclusion. The demographics of caregivers, their familial relation to the patient, and their socioeconomic status (education, both marital and financial status, and occupations) were recorded. Additionally, data from MM patients were retrieved: (1) clinical and demographic data, (2) light and heavy chain types, (3) disease stage, (4) lytic lesions, and (5) treatment(s). The Caregiver Quality of Life Index-Cancer (CQOLC) questionnaire contains four sub-scores and a total score and was administered to all caregivers who volunteered to participate.

Results: A total of 73 patients and their caregivers were included in the study. For patients, their mean age was 65.7 (11.4) years, 52% were female, and the mean value of the disease duration was 30.5 (16.0–66.5) months. For caregivers, their mean age was 47.2 (12.8) years, and 63% were females. Multivariable linear regression revealed that higher (>40 years) caregiver age was independently associated with a higher CQOLC Burden and Positive adaptation score. Being a female caregiver was independently associated with a higher CQOLC Disruptiveness score. Having university-level or higher education status was independently associated with a lower CQOLC Financial Concerns score. In terms of the overall score, we found that higher (>40 years) caregiver age and the gender of the caregiver (female) appear to be factors that are independently associated with higher CQOLC total scores, whereas being a second-degree relative to the patient independently lowered the total score.

Conclusion: Among caregivers of MM patients, those who were older, female, and/or the first-degree relative of the patient (versus second-degree) with having lower education (versus university or higher) resulted in an improved caregiver QoL. The gender bias among caregivers is also a novel finding.


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Seitzler S, Finley-Oliver E, Simonelli C, Baz R. Quality of life in multiple myeloma: considerations and recommendations. Expert Review of Hematology. 2019;12(6):419-24. Epub 2019/05/16. doi: 10.1080/17474086.2019.1613886. PubMed PMID: 31091117.

Cowan AJ, Green DJ, Kwok M, Lee S, Coffey DG, Holmberg LA, et al. Diagnosis and management of multiple myeloma: a review. JAMA. 2022;327(5):464-77.

Kumar SK, Dispenzieri A, Lacy MQ, Gertz MA, Buadi FK, Pandey S, et al. Continued improvement in survival in multiple myeloma: changes in early mortality and outcomes in older patients. Leukemia. 2014;28(5):1122-8. Epub 2013/10/26. doi: 10.1038/leu.2013.313. PubMed PMID: 24157580; PubMed Central PMCID: PMC4000285.

Moreau P, Masszi T, Grzasko N, Bahlis NJ, Hansson M, Pour L, et al. Oral Ixazomib, Lenalidomide, and Dexamethasone for Multiple Myeloma. The New England Journal of Medicine. 2016;374(17):1621-34. Epub 2016/04/28. doi: 10.1056/NEJMoa1516282. PubMed PMID: 27119237.

Faiman B. Disease and Symptom Care: A Focus on Specific Needs of Patients With Multiple Myeloma. Clinical Journal of Oncology Nursing. 2017;21(5 Suppl):3-6. Epub 2017/09/26. doi: 10.1188/17.Cjon.S5.3-6. PubMed PMID: 28945733.

Engelhardt M, Ihorst G, Singh M, Rieth A, Saba G, Pellan M, et al. Real-World Evaluation of Health-Related Quality of Life in Patients With Multiple Myeloma From Germany. Clinical Lymphoma, Myeloma & Leukemia. 2021;21(2):e160-e75. Epub 2020/11/22. doi: 10.1016/j.clml.2020.10.002. PubMed PMID: 33218965.

O'Donnell EK, Shapiro YN, Yee AJ, Nadeem O, Laubach JP, Branagan AR, et al. Quality of life, psychological distress, and prognostic perceptions in caregivers of patients with multiple myeloma. Blood Advances. 2022;6(17):4967-74. Epub 2022/07/19. doi: 10.1182/bloodadvances.2022007127. PubMed PMID: 35848842; PubMed Central PMCID: PMC9631626.

Lambert SD, Harrison JD, Smith E, Bonevski B, Carey M, Lawsin C, et al. The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review. BMJ Supportive & Palliative Care. 2012;2(3):224-30. Epub 2012/09/01. doi: 10.1136/bmjspcare-2012-000226. PubMed PMID: 24654195.

Unsar S, Erol O, Ozdemir O. Caregiving burden, depression, and anxiety in family caregivers of patients with cancer. European Journal of Oncology Nursing. 2021;50:101882. Epub 2021/01/10. doi: 10.1016/j.ejon.2020.101882. PubMed PMID: 33421929.

Pereira MG, Vilaça M, Pinheiro M, Ferreira G, Pereira M, Faria S, et al. Quality of life in caregivers of patients with multiple myeloma. Aging & Mental Health. 2020;24(9):1402-10. Epub 2019/05/28. doi: 10.1080/13607863.2019.1617240. PubMed PMID: 31129996.

Simoneau TL, Mikulich-Gilbertson SK, Natvig C, Kilbourn K, Spradley J, Grzywa-Cobb R, et al. Elevated peri-transplant distress in caregivers of allogeneic blood or marrow transplant patients. Psycho-oncology. 2013;22(9):2064-70. Epub 2013/02/27. doi: 10.1002/pon.3259. PubMed PMID: 23440998; PubMed Central PMCID: PMC3696414.

Weitzner MA, Meyers CA, Steinbruecker S, Saleeba AK, Sandifer SD. Developing a care giver quality-of-life instrument. Preliminary steps. Cancer Practice. 1997;5(1):25-31. Epub 1997/01/01. PubMed PMID: 9128493.

Dimopoulos MA, Moreau P, Terpos E, Mateos MV, Zweegman S, Cook G, et al. Multiple Myeloma: EHA-ESMO Clinical Practice Guidelines for Diagnosis, Treatment and Follow-up. HemaSphere. 2021;5(2):e528. Epub 2021/02/09. doi: 10.1097/hs9.0000000000000528. PubMed PMID: 33554050; PubMed Central PMCID: PMC7861652.

Stoopler ET, Vogl DT, Stadtmauer EA. Medical management update: multiple myeloma. Oral Surgery, Oral Medicine, Oral Pathology, Oral Radiology, and Endodontics. 2007;103(5):599-609. Epub 2007/02/13. doi: 10.1016/j.tripleo.2006.10.026. PubMed PMID: 17291793.

Engelhardt M, Kleber M, Udi J, Wäsch R, Spencer A, Patriarca F, et al. Consensus statement from European experts on the diagnosis, management, and treatment of multiple myeloma: from standard therapy to novel approaches. Leukemia & Lymphoma. 2010;51(8):1424-43. Epub 2010/06/01. doi: 10.3109/10428194.2010.487959. PubMed PMID: 20509769.

Bektas HA, Ozer ZC. Reliability and validity of the caregiver quality of life index-cancer (CQOLC) scale in Turkish cancer caregivers. Journal of Clinical Nursing. 2009;18(21):3003-12. Epub 2009/09/09. doi: 10.1111/j.1365-2702.2009.02915.x. PubMed PMID: 19735338.

Ozer ZC, Firat MZ, Bektas HA. Confirmatory and exploratory factor analysis of the caregiver quality of life index-cancer with Turkish samples. Quality of Life Research. 2009;18(7):913-21. Epub 2009/06/26. doi: 10.1007/s11136-009-9503-1. PubMed PMID: 19554474.

National Cancer Institute. What Is Cancer? Available online: https://www.cancer.gov/about-cancer/understanding/what-is-cancer (accessed on 30 August 2022).

Guerra-Martín MD, Casado-Espinosa MDR, Gavira-López Y, Holgado-Castro C, López-Latorre I, Borrallo-Riego Á. Quality of Life in Caregivers of Cancer Patients: A Literature Review. International Journal of Environmental Research and Public Health. 2023;20(2). Epub 2023/01/22. doi: 10.3390/ijerph20021570. PubMed PMID: 36674325; PubMed Central PMCID: PMC9863368.

Burke J, Parker R. Quality of life assessment in multiple myeloma patient and their caregivers. Clinical Lymphoma, Myeloma. 2019;19(10):e349.

Ramsenthaler C, Kane P, Gao W, Siegert RJ, Edmonds PM, Schey SA, et al. Prevalence of symptoms in patients with multiple myeloma: a systematic review and meta-analysis. European Journal of Haematology. 2016;97(5):416-29. Epub 2016/08/17. doi: 10.1111/ejh.12790. PubMed PMID: 27528496.

Metin T, Uğur Ö, Özdemir S, Gönderen A, Sunu C. The unknown impact of multiple myeloma: assessing the impact of financial well-being on quality of life of caregivers. Supportive Care in Cancer. 2023;31(5):288. Epub 2023/04/20. doi: 10.1007/s00520-023-07751-1. PubMed PMID: 37079098.

Cömert M, Güneş AE, Sahin F, Saydam G. Quality of life and supportive care in multiple myeloma. Turkish Journal of Haematology. 2013;30(3):234-46. Epub 2014/01/05. doi: 10.4274/Tjh.2012.0192. PubMed PMID: 24385802; PubMed Central PMCID: PMC3878535.

Prica A, Dhir V, Aitken R, Paul HK, Espin-Garcia O, Bhella S, et al. Quality of life and caregiver burden in patients and their caregivers undergoing outpatient autologous stem cell transplantation compared to inpatient transplantation. Blood. 2021;138:3055.

Lu L, Pan B, Sun W, Cheng L, Chi T, Wang L. Quality of life and related factors among cancer caregivers in China. Psychiatry and Clinical Neurosciences. 2010;64(5):505-13. Epub 2010/10/07. doi: 10.1111/j.1440-1819.2010.02131.x. PubMed PMID: 20923430.

Nijboer C, Tempelaar R, Sanderman R, Triemstra M, Spruijt RJ, van den Bos GA. Cancer and caregiving: the impact on the caregiver's health. Psycho-oncology. 1998;7(1):3-13. Epub 1998/03/28. doi: 10.1002/(sici)1099-1611(199801/02)7:1<3::Aid-pon320>3.0.Co;2-5. PubMed PMID: 9516646.

Hebert RS, Schulz R. Caregiving at the end of life. Journal of Palliative Medicine. 2006;9(5):1174-87. Epub 2006/10/17. doi: 10.1089/jpm.2006.9.1174. PubMed PMID: 17040156.

Pitceathly C, Maguire P. The psychological impact of cancer on patients' partners and other key relatives: a review. European Journal of Cancer (Oxford, England : 1990). 2003;39(11):1517-24. Epub 2003/07/12. doi: 10.1016/s0959-8049(03)00309-5. PubMed PMID: 12855257.

Yihedego E, Aga F, Gela D, Boka A. Quality of Life and Associated Factors Among Family Caregivers of Adult Cancer Patients in Addis Ababa, Ethiopia. Cancer Management and Research. 2020;12:10047-54. Epub 2020/10/30. doi: 10.2147/cmar.S266416. PubMed PMID: 33116861; PubMed Central PMCID: PMC7569250.

Ratnakar S, Banupriya C, Doureradjou P, Vivekanandam S, Srivastava MK, Koner BC. Evaluation of anxiety, depression and urinary protein excretion among the family caregivers of advanced cancer patients. Biological Psychology. 2008;79(2):234-8. Epub 2008/07/01. doi: 10.1016/j.biopsycho.2008.06.001. PubMed PMID: 18586069.

Kurtin S, Lilleby K, Spong J. Caregivers of multiple myeloma survivors. Clinical Journal of Oncology nursing. 2013;17 Suppl:25-32. Epub 2013/11/28. doi: 10.1188/13.Cjon.S2.25-32. PubMed PMID: 24280456.

Deniz H, Inci F. The burden of care and quality of life of caregivers of leukemia and lymphoma patients following peripheric stem cell transplantation. Journal of psychosocial oncology. 2015;33(3):250-62. Epub 2015/03/12. doi: 10.1080/07347332.2015.1019660. PubMed PMID: 25758128.

Tang W, Thomas R, Parikh K, Goldschmidt D, Pelletier C, Swallow E, et al. PCN218 Burden of Illness on Patients And Caregivers and Quality of Life Outcomes of Triple-Class Exposed (TCE) Patients With Multiple Myeloma (MM) In The United States. Value in Health. 2021;24:S60.

Carreñoa SP, Sánchez-Herrera B, Carrillo GM, Chaparro-Díaz L, Gómez OJ. Carga de la enfermedad crónica para los sujetos implicados en el cuidado/The burden of chronic disease for the subjects involved in the care/Carga da enfermidade crônica para os sujeitos implicados no cuidado. Revista de la Facultad Nacional de Salud Pública. 2016;34(3):342.

Kilic ST, Oz F. Family Caregivers' Involvement in Caring with Cancer and their Quality of Life. Asian Pac J Cancer Prev. 2019;20(6):1735-41. Epub 2019/06/28. doi: 10.31557/apjcp.2019.20.6.1735. PubMed PMID: 31244294; PubMed Central PMCID: PMC7021632.

Nijboer C, Triemstra M, Tempelaar R, Mulder M, Sanderman R, van den Bos GA. Patterns of caregiver experiences among partners of cancer patients. The Gerontologist. 2000;40(6):738-46. Epub 2000/12/29. doi: 10.1093/geront/40.6.738. PubMed PMID: 11131090.

Silistre ES, Hatipoğlu HU, Yeşilbaş O, Gürbüz FŞ, Ozturk E, Yalcinkaya A. Investigating the psychological impact of COVID-19 on healthcare workers in the intensive care unit. Journal of Surgery and Medicine. 2022;6(1):29-35.

Cai Y, Simons A, Toland S, Zhang J, Zheng K. Informal caregivers' quality of life and management strategies following the transformation of their cancer caregiving role: A qualitative systematic review. International Journal of Nursing Sciences. 2021;8(2):227-36. Epub 2021/05/18. doi: 10.1016/j.ijnss.2021.03.006. PubMed PMID: 33997139; PubMed Central PMCID: PMC8105556.

van Roij J, Brom L, Youssef-El Soud M, van de Poll-Franse L, Raijmakers NJH. Social consequences of advanced cancer in patients and their informal caregivers: a qualitative study. Supportive Care in Cancer. 2019;27(4):1187-95. Epub 2018/09/14. doi: 10.1007/s00520-018-4437-1. PubMed PMID: 30209602; PubMed Central PMCID: PMC6394690.

Abbasi A, Mirhosseini S, Basirinezhad MH, Ebrahimi H. Relationship between caring burden and quality of life in caregivers of cancer patients in Iran. Supportive Care in Cancer. 2020;28(9):4123-9. Epub 2019/12/25. doi: 10.1007/s00520-019-05240-y. PubMed PMID: 31872293.

Gómez KP, Hurtado MM, Bedoya LFS. Acompañamiento al enfermo crónico o terminal y calidad de vida en familia. Poiésis. 2019(36):126-46.

Perez-Ordóñez F, Frías-Osuna A, Romero-Rodríguez Y, Del-Pino-Casado R. Coping strategies and anxiety in caregivers of palliative cancer patients. European Journal of Cancer Care. 2016;25(4):600-7. Epub 2016/04/22. doi: 10.1111/ecc.12507. PubMed PMID: 27099167.

Benites AC, Rodin G, de Oliveira-Cardoso É A, Dos Santos MA. "You begin to give more value in life, in minutes, in seconds": spiritual and existential experiences of family caregivers of patients with advanced cancer receiving end-of-life care in Brazil. Supportive Care in Cancer. 2022;30(3):2631-8. Epub 2021/11/25. doi: 10.1007/s00520-021-06712-w. PubMed PMID: 34817692; PubMed Central PMCID: PMC8611251.

Gabriel I, Creedy D, Coyne E. Quality of life and associated factors among adults living with cancer and their family caregivers. Nursing & Health Sciences. 2021;23(2):419-29. Epub 2021/02/20. doi: 10.1111/nhs.12823. PubMed PMID: 33605071.

Nayak MG, George A. Effectiveness of Multicomponent Intervention on Quality of Life of Family Caregivers of Cancer Patients. Asian Pac J Cancer Prev. 2021;22(9):2789-95. Epub 2021/09/29. doi: 10.31557/apjcp.2021.22.9.2789. PubMed PMID: 34582647; PubMed Central PMCID: PMC8850909.






Research Article

How to Cite

Doğan EE, Demirel N. Factors associated with quality of life in caregivers of patients with multiple myeloma: QoL in caregivers of multiple myeloma patients. J Surg Med [Internet]. 2023 Oct. 27 [cited 2024 Apr. 19];7(10):709-15. Available from: https://jsurgmed.com/article/view/8002