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多发性骨髓瘤患者的症状负担、感知控制和生活质量。

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

机构信息

Cancer Support Community, Research and Training Institute, Philadelphia, Pennsylvania.

Duke Cancer Institute, and.

出版信息

J Natl Compr Canc Netw. 2020 Aug;18(8):1087-1095. doi: 10.6004/jnccn.2020.7561.

Abstract

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.

摘要

背景

多发性骨髓瘤(MM)的新疗法提高了生存率,但往往使患者面临更高的毒性和延长的治疗,导致并发症和副作用的增加。我们评估了全国 MM 患者样本中症状负担、对疾病的控制感与生活质量(QoL)之间的关联。

方法

在这项观察性、横断面研究中,我们使用癌症体验登记研究倡议的数据,研究了疾病轨迹中 289 名 MM 患者的症状和功能相关问题。我们应用分层多元线性回归分析来探讨症状负担和对疾病的控制感与 QoL 指标(抑郁、焦虑和社会满意度)之间的关联。

结果

在我们的样本中,73%的 MM 患者报告正在接受治疗;39%的患者经历了复发;56%的患者接受了 1 到 2 次自体移植,10%的患者接受了≥3 次自体移植,4%的患者接受了异体和自体移植;30%的患者未接受干细胞移植。诊断后的平均时间为 4.4 年。最受关注的问题包括饮食和营养(61%)、身体活动(59%)、活动能力(56%)、疲劳(55%)、疼痛(52%)和睡眠(46%)。只有 27%的患者认为自己对疾病有控制感,而 48%的患者认为自己对 MM 的身体副作用有控制感。焦虑和抑郁的三分之一左右和社会满意度的近三分之二的差异可以由社会人口统计学、临床和症状负担变量来解释。对疾病的控制感显著预测了抑郁和焦虑,但不能预测社会满意度。我们的研究结果突出了 MM 患者对身体症状和功能的极大关注。此外,更大的症状负担显著导致了较差的 QoL,而对疾病的控制感较低则与抑郁和焦虑有关。

结论

MM 患者和幸存者经历了实质性的长期 QoL 问题。综上所述,这些发现指出了为 MM 患者提供全面的症状管理、综合姑息治疗和增强社会和情感支持的迫切需要。

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