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罗马尼亚患者对多发性骨髓瘤持续治疗的看法。

The Perspective of Romanian Patients on Continuous Therapy for Multiple Myeloma.

作者信息

Irimia Ruxandra, Badelita Sorina Nicoleta, Barbu Sinziana, Zidaru Larisa, Carlan Ioana Loredana, Preda Oana Diana, Coriu Daniel

机构信息

Department of Hematology, "Carol Davila" University of Medicine and Pharmacy, 030167 Bucharest, Romania.

Fundeni Clinical Institute, 022328 Bucharest, Romania.

出版信息

J Pers Med. 2024 Aug 28;14(9):910. doi: 10.3390/jpm14090910.

Abstract

UNLABELLED

The treatment paradigm of multiple myeloma (MM) has shifted in the past years, as continuous therapy is becoming the standard of care for both newly diagnosed and relapsed patients. Although it is indisputable that continuous therapy has added a great benefit on the progression-free as well as overall survival, it is still unclear what the patients' perspective is on this therapeutic approach.

METHODS

This study included 155 adult MM patients from Fundeni Clinical Institute in Romania, receiving continuous therapy with daratumumab, proteasome inhibitors, immunomodulators, or bi-specific antibodies. The patients had varied economic, social, and educational backgrounds. We developed a questionnaire to interrogate the quantitative and qualitative effect of the therapy on the patients' personal and professional life and to identify the side effects that had the strongest impact on their quality of life.

RESULTS

74.83% of the patients reported that the treatment they received negatively impacted their quality of life. Among them, 40% considered that the most detrimental aspects of the therapy are the financial burden and the negative impact on their professional life. One-third of the patients reported that the therapy negatively impacted their personal life and that it had a deleterious effect on their relationship with their partner and family members. In terms of the side effects experienced, patients considered that tiredness was the main factor causing a decrease in their quality of life, followed by insomnia and bone pain. Despite this, almost none of the patients considered dropping the therapy, and almost half of the patients considered that the frequent visits to the hospital offered them psychological comfort. In addition, more than 70% of the patients declared that they were afraid to stop the therapy if given the choice, with the main concerns being the fear of an early relapse.

CONCLUSIONS

Although continuous therapy is associated with a high financial burden and a negative impact on both professional and personal life, the frequent visits to the hospital appear to be reassuring. Moreover, the patients would not opt for treatment discontinuation and felt safer when monitored frequently.

摘要

未标注

在过去几年中,多发性骨髓瘤(MM)的治疗模式发生了转变,因为持续治疗正成为新诊断和复发患者的标准治疗方法。尽管持续治疗在无进展生存期和总生存期方面带来了巨大益处这一点无可争议,但患者对这种治疗方法的看法仍不明确。

方法

本研究纳入了罗马尼亚Fundeni临床研究所的155例成年MM患者,他们接受了达雷妥尤单抗、蛋白酶体抑制剂、免疫调节剂或双特异性抗体的持续治疗。这些患者具有不同的经济、社会和教育背景。我们设计了一份问卷,以询问该治疗对患者个人和职业生活的定量和定性影响,并确定对其生活质量影响最大的副作用。

结果

74.83%的患者报告称他们接受的治疗对其生活质量产生了负面影响。其中,40%的患者认为治疗最有害的方面是经济负担以及对其职业生活的负面影响。三分之一的患者报告称治疗对其个人生活产生了负面影响,并且对其与伴侣和家庭成员的关系有有害影响。就所经历的副作用而言,患者认为疲劳是导致其生活质量下降的主要因素,其次是失眠和骨痛。尽管如此,几乎没有患者考虑停止治疗,并且几乎一半的患者认为频繁就医给他们带来了心理安慰。此外,超过70%的患者表示,如果可以选择,他们害怕停止治疗,主要担忧是害怕早期复发。

结论

尽管持续治疗伴随着高额经济负担以及对职业和个人生活的负面影响,但频繁就医似乎让人安心。此外,患者不会选择停止治疗,并且在频繁监测时会感觉更安全。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/94aa/11433240/80239e5aa4c5/jpm-14-00910-g001.jpg

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