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Licensed Unlicensed Requires Authentication Published by De Gruyter October 27, 2020

Everyday living with pain – reported by patients with multiple myeloma

Eva Jespersen, Lene K. Nielsen, Rikke F. Larsen, Sören Möller and Lene Jarlbæk

Abstract

Objectives

The prevalence and impact of pain among patients with multiple myeloma (MM) in their everyday life require renewed attention. MM patients’ survival has increased considerably over the last decades and active disease episodes are interrupted by longer periods with disease inactivity. The aim with this study is to explore pain intensity and pain interference with daily activities during periods of stable or inactive MM disease.

Methods

In a cross-sectional study from September 2017 to May 2019, self-reliant MM patients in stable disease filled a comprehensive selection of validated questionnaires regarding pain, other symptoms and quality of life, which they experienced in their daily living. Patient reported pain intensity and interference with daily activities were analyzed for associations with several clinical and demographic factors and discussed from a total pain perspective. The two outcomes, pain intensity and pain interfering with daily activities, were analyzed in two age groups (<65 years or ≥65 years).

Results

Among 92 participants, 80% experienced pain to interfere with their daily activities (equal in both age groups), and 63% reported moderate to severe pain intensity; (75% ≥65 years, and 49% <65 years). Pain intensity was significantly associated with signs of depression (OR 4.0 [95% CI: 1.2–13.9]) and age ≥65 years (OR 3.3 [95% CI: 1.2–9.2]). Pain interfering with daily activities was nearly significantly associated with bone involvement (OR 3.4 [95% CI: 1.0–11.6]) and signs of depression (OR 5.9 [95% CI: 1.0–36.3]). The patients were bothered with many problems in addition to pain; fatigue (91%), bone involvement (74%), signs of depression (41%), signs of anxiety (32%), comorbidity (29%) and uncertainty in relation to employment or pension (25%). Neuropathic pain was more prevalent in the feet (33% [95% CI: 23%, 43%]) compared with pain in the hands (13% [95% CI: 7%, 22%]).

Conclusions

In periods of stable disease, many MM patients continue to live with intense pain interfering with their daily activities. Additional or associated problems are the presence of bone involvement, neuropathic pain, older age, uncertainty in relation to employment or pension, comorbidity, signs of depression, anxiety and fatigue. This highlights the importance of health professionals being receptive to the patients’ experience of pain throughout their trajectories, to assess pain systematically and to interpret this experience from a total pain perspective. While pain problems in relation to diagnosing and treating MM is well known, this study brings the message that even during periods of stable or inactive MM disease, the patients experience pain with a moderate to severe intensity, that interferes with their everyday living. The improved survival and the consequential long trajectories make coherence in the pain treatment even more important for the patients, who may see different professionals in different health care settings for different reasons. The patient group requires a coordinated, holistic patient-centered pain treatment throughout the disease trajectory.


Corresponding author: Eva Jespersen, Department of Rehabilitation, Odense University Hospital, Institute of Clinical Research, University of Southern Denmark, Kløvervænget 8B, 5000 Odense C, Denmark; and REHPA – The Danish Knowledge Centre for Rehabilitation and Palliative Care, Institute of Clinical Research, University of Southern Odense, Odense, Denmark, Phone: +45 29617980, E-mail:

Acknowledgments

The authors are deeply grateful to the participants, the clinical team at the Danish Knowledge Centre for Rehabilitation and Palliative Care (REHPA) and with special thanks to the project manager Jan Børge Tofte for taking the lead on the residential courses. Finally we also wish to thank The Danish Myeloma Patient Association, who participated in the reference group giving inputs to the content of the REHPA rehabilitation program.

  1. Research funding: This study was financed by REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, and did not receive any funding. LKN received research funding from University of Southern Denmark, Celgene, Takeda, Amgen and Janssen during conduct of the study. LKN received this research funding as a part of her PhD study. The present study is not part of her PhD, but as it was conducted in overlapping time intervals we decided to report.

  2. Author contributions: All authors have accepted responsibility for the entire content of this manuscript and approved its submission.

  3. Conflict of interest: EJ, RFL, SM and LJ declare no conflicts of interest.

  4. Informed consent: Informed consent has been obtained from all individuals included in this study.

  5. Ethical approval: The study was registered at the Danish Data Protection Agency by number 19/19123. No approval from the Danish Ethic Committee was necessary, since no invasive elements were included and since the rehabilitation courses in REHPA are established as a public rehabilitation service in Denmark. The study was performed in accordance with the tenets of the Helsinki Declaration.

References

1. Boland, E, Eiser, C, Ezaydi, Y, Greenfield, DM, Ahmedzai, SH, Snowden, JA. 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 Manag 2013;46:671–80. https://doi.org/10.1016/j.jpainsymman.2012.11.003.Search in Google Scholar

2. Jordan, K, Proskorovsky, I, Lewis, P, Ishak, J, Payne, K, Lordan, N, 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 Canc: Off J Multinatl Assoc Support Care Canc 2014;22:417–26. https://doi.org/10.1007/s00520-013-1991-4.Search in Google Scholar

3. 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;83:139–48. https://doi.org/10.1111/j.1600-0609.2009.01250.x.Search in Google Scholar

4. 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. Eur J Haematol 2016;97:416–29. https://doi.org/10.1111/ejh.12790.Search in Google Scholar

5. Nielsen, LK, Jarden, M, Andersen, CL, Frederiksen, H, Abildgaard, N. A systematic review of health-related quality of life in longitudinal studies of myeloma patients. Eur J Haematol 2017;99:3–17. https://doi.org/10.1111/ejh.12882.Search in Google Scholar

6. Ramsenthaler, C, Gao, W, Siegert, RJ, Edmonds, PM, Schey, SA, Higginson, IJ. Symptoms and anxiety predict declining health-related quality of life in multiple myeloma: a prospective, multi-centre longitudinal study. Palliat Med 2019;33:541–51. https://doi.org/10.1177/0269216319833588.Search in Google Scholar

7. Ahmedzai, SH, Snowden, JA, Ashcroft, AJ, Cairns, DA, Williams, C, Hockaday, A, et al. Patient-reported outcome results from the open-label, randomized phase III myeloma X trial evaluating salvage autologous stem-cell transplantation in relapsed multiple myeloma. J Clin Oncol 2019;37. https://doi.org/10.1200/jco.18.01006.Search in Google Scholar

8. Blimark, CH, Turesson, I, Genell, A, Ahlberg, L, Bjorkstrand, B, Carlson, K, et al. Outcome and survival of myeloma patients diagnosed 2008–2015. Real-world data on 4904 patients from the Swedish Myeloma Registry. Haematologica 2018;103:506–13. https://doi.org/10.3324/haematol.2017.178103.Search in Google Scholar

9. Chim, CS, Kumar, SK, Orlowski, RZ, Cook, G, Richardson, PG, Gertz, MA, et al. Management of relapsed and refractory multiple myeloma: novel agents, antibodies, immunotherapies and beyond. Leukemia 2018;32:252–62. https://doi.org/10.1038/leu.2017.329.Search in Google Scholar

10. Mols, F, Oerlemans, S, Vos, AH, Koster, A, Verelst, S, Sonneveld, P, 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;89:311–9. https://doi.org/10.1111/j.1600-0609.2012.01831.x.Search in Google Scholar

11. Kyle, RA. Multiple myeloma: review of 869 cases. Mayo Clin Proc 1975;50:29–40.Search in Google Scholar

12. Beijers, AJ, Vreugdenhil, G, Oerlemans, S, Eurelings, M, Minnema, MC, Eeltink, CM, et al. Chemotherapy-induced neuropathy in multiple myeloma: influence on quality of life and development of a questionnaire to compose common toxicity criteria grading for use in daily clinical practice. Support Care Canc 2016;24:2411–20. https://doi.org/10.1007/s00520-015-3032-y.Search in Google Scholar

13. Ropper, AH, Gorson, KC. Neuropathies associated with paraproteinemia. N Engl J Med 1998;338:1601–7. https://doi.org/10.1056/nejm199805283382207.Search in Google Scholar

14. Lanzani, F, Mattavelli, L, Frigeni, B, Rossini, F, Cammarota, S, Petro, D, et al. Role of a pre-existing neuropathy on the course of bortezomib-induced peripheral neurotoxicity. J Peripher Nerv Syst 2008;13:267–74. https://doi.org/10.1111/j.1529-8027.2008.00192.x.Search in Google Scholar

15. Acaster, S, Gaugris, S, Velikova, G, Yong, K, Lloyd, AJ. Impact of the treatment-free interval on health-related quality of life in patients with multiple myeloma: a UK cross-sectional survey. Support Care Canc 2013;21:599–607. https://doi.org/10.1007/s00520-012-1548-y.Search in Google Scholar

16. Porta-Sales, J, Guerrero-Torrelles, M, Moreno-Alonso, D, Sarra-Escarre, J, Clapes-Puig, V, Trelis-Navarro, J, et al. Is early palliative care feasible in patients with multiple myeloma?. J Pain Symptom Manag 2017;54:692–700. https://doi.org/10.1016/j.jpainsymman.2017.04.012.Search in Google Scholar

17. Rajkumar, SV, Dimopoulos, MA, Palumbo, A, Blade, J, Merlini, G, Mateos, MV, et al. International Myeloma Working Group updated criteria for the diagnosis of multiple myeloma. Lancet Oncol 2014;15:e538–48. https://doi.org/10.1016/s1470-2045(14)70442-5.Search in Google Scholar

18. Harris, PA, Taylor, R, Thielke, R, Payne, J, Gonzalez, N, Conde, JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inf 2009;42:377–81. https://doi.org/10.1016/j.jbi.2008.08.010.Search in Google Scholar

19. Swarm, R, Abernethy, AP, Anghelescu, DL, Benedetti, C, Blinderman, CD, Boston, B, et al. Adult cancer pain. J Natl Compr Canc Netw 2010;8:1046–86. https://doi.org/10.6004/jnccn.2010.0076.Search in Google Scholar

20. Aaronson, NK, Ahmedzai, S, Bergman, B, Bullinger, M, Cull, A, Duez, NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 1993;85:365–76. https://doi.org/10.1093/jnci/85.5.365.Search in Google Scholar

21. Postma, TJ, Aaronson, NK, Heimans, JJ, Muller, MJ, Hildebrand, JG, Delattre, JY, et al. The development of an EORTC quality of life questionnaire to assess chemotherapy-induced peripheral neuropathy: the QLQ-CIPN20. Eur J Canc 2005;41:1135–9. https://doi.org/10.1016/j.ejca.2005.02.012.Search in Google Scholar

22. Kroenke, K, Spitzer, RL, Williams, JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med 2001;16:606–13. https://doi.org/10.1046/j.1525-1497.2001.016009606.x.Search in Google Scholar

23. Spitzer, RL, Kroenke, K, Williams, JB, Lowe, B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 2006;166:1092–7. https://doi.org/10.1001/archinte.166.10.1092.Search in Google Scholar

24. Mendoza, TR, Wang, XS, Cleeland, CS, Morrissey, M, Johnson, BA, Wendt, JK, et al. The rapid assessment of fatigue severity in cancer patients: use of the Brief Fatigue Inventory. Cancer 1999;85:1186–96. https://doi.org/10.1002/(sici)1097-0142(19990301)85:5<1186::aid-cncr24>3.0.co;2-n.Search in Google Scholar

25. Charlson, ME, Pompei, P, Ales, KL, MacKenzie, CR. A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chron Dis 1987;40:373–83. https://doi.org/10.1016/0021-9681(87)90171-8.Search in Google Scholar

26. Syrjala, KL, Jensen, MP, Mendoza, ME, Yi, JC, Fisher, HM, Keefe, FJ. Psychological and behavioral approaches to cancer pain management. J Clin Oncol 2014;32:1703–11. https://doi.org/10.1200/jco.2013.54.4825.Search in Google Scholar

27. Wilson Rogers, LP, Rennoldson, M. Are pain and fatigue in multiple myeloma related to psychosocial factors?: a systematic review. Cancer Nurs 2020;43:121–31. https://doi.org/10.1097/NCC.0000000000000786.Search in Google Scholar

28. Clark, D. ‘Total pain’, disciplinary power and the body in the work of Cicely Saunders, 1958–1967. Soc Sci Med 1999;49:727–36. https://doi.org/10.1016/s0277-9536(99)00098-2.Search in Google Scholar

29. Vallet, S, Filzmoser, JM, Pecherstorfer, M, Podar, K. Myeloma bone disease: update on pathogenesis and novel treatment strategies. Pharmaceutics 2018;10. https://doi.org/10.3390/pharmaceutics10040202.Search in Google Scholar

30. Hui, D, Abdelghani, E, Chen, J, Dibaj, S, Zhukovsky, D, Dev, R, et al. Chronic non-malignant pain in patients with cancer seen at a timely outpatient palliative care clinic. Cancers 2020;12. https://doi.org/10.3390/cancers12010214.Search in Google Scholar

31. Hackett, J, Naugle, KE, Naugle, KM. The decline of endogenous pain modulation with aging: a meta-analysis of temporal summation and conditioned pain modulation. J Pain 2019;21:514–28. https://doi.org/10.1016/j.jpain.2019.09.005.Search in Google Scholar

32. Wilson, AT, George, SZ, Bialosky, JE. Patient-defined outcomes for pain, fatigue, emotional distress, and interference with activities did not differ by age for individuals with musculoskeletal pain. Pain Rep 2019;4:e798. https://doi.org/10.1097/pr9.0000000000000798.Search in Google Scholar

33. Snowden, JA, Greenfield, DM, Bird, JM, Boland, E, Bowcock, S, Fisher, A, et al. The British society for H. guidelines for screening and management of late and long-term consequences of myeloma and its treatment. Br J Haematol 2017;176:888–907. https://doi.org/10.1111/bjh.14514.Search in Google Scholar

Received: 2020-06-08
Accepted: 2020-08-26
Published Online: 2020-10-27
Published in Print: 2021-01-27

© 2020 Walter de Gruyter GmbH, Berlin/Boston