Symptom Burden, Perceived Control, and Quality of Life Among Patients Living With Multiple Myeloma

View More View Less
  • 1 Cancer Support Community, Research and Training Institute, Philadelphia, Pennsylvania;
  • | 2 Duke Cancer Institute, and
  • | 3 Division of Hematologic Malignancies and Cellular Therapy, Duke University School of Medicine, Durham, North Carolina;
  • | 4 College of Human Medicine, Michigan State University, East Lansing, Michigan; and
  • | 5 Now with Concerto HealthAI, Boston, Massachusetts.
Restricted access

Background: New therapies for multiple myeloma (MM) have improved survival rates but often expose patients to heightened toxicities and prolonged treatment, leading to increasing complications and side effects. We evaluated the association between symptom burden, perceived control over illness, and quality of life (QoL) among a national sample of patients with MM. Methods: For this observational, cross-sectional study, we used data from the Cancer Experience Registry research initiative to examine symptom- and functioning-related concerns among 289 patients with MM across the illness trajectory. We applied hierarchical multiple linear regression analyses to explore associations between symptom burden and perceived control over illness with QoL indicators: depression, anxiety, and social satisfaction. Results: In our sample, 73% of participants with MM reported currently receiving treatment; 39% experienced relapse; 56% received 1 to 2 autologous transplants, 10% received ≥3 autologous transplants, and 4% received allogeneic and autologous transplants; 30% had not received a stem cell transplant. Average time since diagnosis was 4.4 years. The most highly endorsed concerns included eating and nutrition (61%), physical activity (59%), moving around (56%), fatigue (55%), pain (52%), and sleep (46%). Only 27% believed they had control over their disease, whereas 48% perceived having control over the physical side effects of MM. Approximately one-third of the variance in anxiety and depression and nearly two-thirds of variance in social satisfaction were explained by sociodemographic, clinical, and symptom burden variables. Perceived control over illness significantly predicted depression and anxiety, but not social satisfaction. Our results highlight substantial concern among patients with MM about physical symptoms and function. Additionally, greater symptom burden significantly accounted for poorer QoL, and lower perceived control over illness was linked to depression and anxiety. Conclusions: Patients with MM and survivors experience substantive long-term QoL issues. Together, these findings point to the critical need for comprehensive symptom management, integrated palliative care, and enhancement of social and emotional support for individuals with MM.

Submitted June 3, 2019; accepted for publication March 19, 2020.

Author contributions: Study concept: LeBlanc, Cole, Buzaglo. Funding acquisition: Buzaglo. Methodology: Zaleta, Miller, Buzaglo. Supervision: Zaleta, Buzaglo. Data curation: Zaleta, Miller. Investigation: Buzaglo. Formal analysis: Zaleta, Miller, Olson, McManus. Writing—original draft: All authors.

Disclosures: Dr. Zaleta, Dr. Miller, Dr. Olson, Dr. Yuen, Ms. McManus disclose that their institution has received grant/research support from Amgen Oncology, Bristol Myers Squibb, Celgene Corporation, Genentech, Takeda Oncology, and Novartis during the conduct of the study. Dr. LeBlanc has disclosed that he has received honoraria from AbbVie, Agios, AstraZeneca, Amgen, Carevive, Celgene, Daiichi-Sankyo, Flatiron, Helsinn, Heron, Medtronic, Otsuka, Pfizer, Seattle Genetics, UpToDate, and Welvie, and has received grant/research support from AstraZeneca and Seattle Genetics outside the submitted work. Dr. Cole has disclosed that he has not received any financial consideration from any person or organization to support the preparation, analysis, results, or discussion of this article. Dr. Buzaglo discloses that her institution received grants from Amgen Oncology, Bristol Myers Squibb, Celgene Corporation, Genentech, Takeda Oncology, and Novartis during the conduct of the study; has received honoraria from Carevive; and is currently employed by Concerto HealthAI.

Funding: This work was supported by funding from Genentech (ID0EVIAG3393), Novartis Pharmaceuticals Corporation (ID0EEJAG3394), Celgene (ID0ETJAG3395), Amgen (ID0ECKAG3396), Takeda Oncology (ID0ERKAG3397), and Bristol-Myers Squibb (ID0EALAG3398).

Correspondence: Alexandra K. Zaleta, PhD, Cancer Support Community, Research and Training Institute, 520 Walnut Street, Suite 1170, Philadelphia, PA 19106. Email: azaleta@cancersupportcommunity.org
  • 1.

    Siegel RL, Miller KD, Jemal A. Cancer statistics, 2019. CA Cancer J Clin 2019;69:734.

  • 2.

    Kumar SK, Dispenzieri A, Lacy MQ, et al. . Continued improvement in survival in multiple myeloma: changes in early mortality and outcomes in older patients. Leukemia 2014;28:11221128.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 3.

    Cook G, Ashcroft AJ, Cairns DA, et al. . The effect of salvage autologous stem-cell transplantation on overall survival in patients with relapsed multiple myeloma (final results from BSBMT/UKMF Myeloma X Relapse [Intensive]): a randomised, open-label, phase 3 trial. Lancet Haematol 2016;3:e340351.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 4.

    Ríos-Tamayo R, Sánchez MJ, Puerta JM, et al. . Trends in survival of multiple myeloma: a thirty-year population-based study in a single institution. Cancer Epidemiol 2015;39:693699.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 5.

    Fonseca R, Abouzaid S, Bonafede M, et al. . Trends in overall survival and costs of multiple myeloma, 2000-2014. Leukemia 2017;31:19151921.

  • 6.

    Kyle RA, Rajkumar SV. Criteria for diagnosis, staging, risk stratification and response assessment of multiple myeloma. Leukemia 2009;23:39.

  • 7.

    Laubach JP, Mitsiades CS, Mahindra A, et al. . Novel therapies in the treatment of multiple myeloma. J Natl Compr Canc Netw 2009;7:947960.

  • 8.

    Joks M, Jurczyszyn A, Machaczka M, et al. . The roles of consolidation and maintenance therapy with novel agents after autologous stem cell transplantation in patients with multiple myeloma. Eur J Haematol 2015;94:109114.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 9.

    Tacchetti P, Terragna C, Galli M, et al. . Bortezomib- and thalidomide-induced peripheral neuropathy in multiple myeloma: clinical and molecular analyses of a phase 3 study. Am J Hematol 2014;89:10851091.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 10.

    Rajkumar SV. Updated diagnostic criteria and staging system for multiple myeloma. Am Soc Clin Oncol Educ Book 2016;35:e418423.

  • 11.

    Ramsenthaler C, Osborne TR, Gao W, et al. . The impact of disease-related symptoms and palliative care concerns on health-related quality of life in multiple myeloma: a multi-centre study. BMC Cancer 2016;16:427.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 12.

    Mols F, Oerlemans S, Vos AH, et al. . Health-related quality of life and disease-specific complaints among multiple myeloma patients up to 10 yr after diagnosis: results from a population-based study using the PROFILES registry. Eur J Haematol 2012;89:311319.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 13.

    de Wet R, Lane H, Tandon A, et al. . ‘It is a journey of discovery’: living with myeloma. Support Care Cancer 2019;27:24352442.

  • 14.

    Chakraborty R, Hamilton BK, Hashmi SK, et al. . Health-related quality of life after autologous stem cell transplantation for multiple myeloma. Biol Blood Marrow Transplant 2018;24:15461553.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 15.

    Boland E, Eiser C, Ezaydi Y, et al. . Living with advanced but stable multiple myeloma: a study of the symptom burden and cumulative effects of disease and intensive (hematopoietic stem cell transplant-based) treatment on health-related quality of life. J Pain Symptom Manage 2013;46:671680.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 16.

    Kvam AK, Waage A. Health-related quality of life in patients with multiple myeloma—does it matter? Haematologica 2015;100:704705.

  • 17.

    Jordan K, Proskorovsky I, Lewis P, et al. . Effect of general symptom level, specific adverse events, treatment patterns, and patient characteristics on health-related quality of life in patients with multiple myeloma: results of a European, multicenter cohort study. Support Care Cancer 2014;22:417426.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 18.

    Ramsenthaler C, Gao W, Siegert RJ, et al. . Symptoms and anxiety predict declining health-related quality of life in multiple myeloma: a prospective, multi-centre longitudinal study. Palliat Med 2019;33:541551.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 19.

    Wallston KA, Wallston BS, Smith S, et al. . Perceived control and health. Curr Psychol Res Rev 1987;6:525.

  • 20.

    Bárez M, Blasco T, Fernández-Castro J, et al. . Perceived control and psychological distress in women with breast cancer: a longitudinal study. J Behav Med 2009;32:187196.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 21.

    Buzaglo JS, Zaleta AK, McManus S, et al. . CancerSupportSource®: validation of a revised multi-dimensional distress screening program for cancer patients and survivors. Support Care Cancer 2020;28:5564.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 22.

    Cella D, Riley W, Stone A, et al. . The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. J Clin Epidemiol 2010;63:11791194.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 23.

    Ramsenthaler C, Kane P, Gao W, et al. . Prevalence of symptoms in patients with multiple myeloma: a systematic review and meta-analysis. Eur J Haematol 2016;97:416429.

  • 24.

    Khatib MN, Gaidhane A, Gaidhane S, et al. . Ghrelin as a promising therapeutic option for cancer cachexia. Cell Physiol Biochem 2018;48:21722188.

  • 25.

    Suzuki H, Asakawa A, Amitani H, et al. . Cancer cachexia—pathophysiology and management. J Gastroenterol 2013;48:574594.

  • 26.

    Yennurajalingam S, Bruera E. Role of corticosteroids for fatigue in advanced incurable cancer: is it a ‘wonder drug’ or ‘deal with the devil’. Curr Opin Support Palliat Care 2014;8:346351.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 27.

    Basen-Engquist K, Alfano CM, Maitin-Shepard M, et al. . Moving Research Into Practice: Physical Activity, Nutrition, and Weight Management for Cancer Patients and Survivors. NAM Perspectives. Washington, DC: National Academy of Medicine; 2018.

    • Search Google Scholar
    • Export Citation
  • 28.

    Groeneveldt L, Mein G, Garrod R, et al. . A mixed exercise training programme is feasible and safe and may improve quality of life and muscle strength in multiple myeloma survivors. BMC Cancer 2013;13:31.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 29.

    Jacobs GD, Pace-Schott EF, Stickgold R, et al. . Cognitive behavior therapy and pharmacotherapy for insomnia: a randomized controlled trial and direct comparison. Arch Intern Med 2004;164:18881896.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 30.

    Sivertsen B, Omvik S, Pallesen S, et al. . Cognitive behavioral therapy vs zopiclone for treatment of chronic primary insomnia in older adults: a randomized controlled trial. JAMA 2006;295:28512858.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 31.

    Hearn J, Higginson IJ. Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliat Med 1998;12:317332.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 32.

    Jacobsen J, Jackson V, Dahlin C, et al. . Components of early outpatient palliative care consultation in patients with metastatic nonsmall cell lung cancer. J Palliat Med 2011;14:459464.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 33.

    Greer JA, Jackson VA, Meier DE, et al. . Early integration of palliative care services with standard oncology care for patients with advanced cancer. CA Cancer J Clin 2013;63:349363.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 34.

    Mayor S. Electronic self reporting of symptoms may improve survival in patients with metastatic cancer. BMJ 2017;357:j2724.

  • 35.

    LeBlanc TW, O’Donnell JD, Crowley-Matoka M, et al. . Perceptions of palliative care among hematologic malignancy specialists: a mixed-methods study. J Oncol Pract 2015;11:e230238.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
All Time Past Year Past 30 Days
Abstract Views 0 0 0
Full Text Views 3310 2424 60
PDF Downloads 740 444 56
EPUB Downloads 0 0 0