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.
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).
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%]).
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.
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.
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.
Author contributions: All authors have accepted responsibility for the entire content of this manuscript and approved its submission.
Conflict of interest: EJ, RFL, SM and LJ declare no conflicts of interest.
Informed consent: Informed consent has been obtained from all individuals included in this study.
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.
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