多发性骨髓瘤患者需求的识别:一项针对以色列患者的问卷调查研究

Identification of Needs of Patients with Multiple Myeloma: A Questionnaire-Based Study in Israeli Patients.

作者信息

Levy Yurkovski Ilana, Ben-Dov Shira, Shoam Varda, Yuz Micha, Lavi Noa

机构信息

Faculty of Medicine, Technion- Israel Institute of Technology, Haifa, Israel.

Hematology Unit, Bnai Zion Medical Center, Haifa, Israel.

出版信息

Acta Haematol. 2025 Jun 24:1-7. doi: 10.1159/000547025.

Abstract

INTRODUCTION

Multiple myeloma is an incurable chronic malignant disease. The disease itself and its treatment impair quality-of-life (QoL), yet there is no data regarding the biopsychosocial needs of patients in the era of new treatments. In the current study, we aimed to identify the biopsychosocial needs of patients with multiple myeloma.

METHODS

This is a descriptive study on patients with multiple myeloma in Israel in 2024. The information was based on a questionnaire examining physical, psychological, and social needs filled out by myeloma patients. We analyzed the main impairments of QoL and what affected them, the main supporter in dealing with the disease, psychosocial needs reported by the patients and the difficulties in dealing with such difficulties.

RESULTS

The main symptom reported by multiple myeloma patients was fatigue. The number of treatment lines worsened QoL (unstandardized coefficient: 0.987, 95% CI: 0.284; 1.691, p = 0.006). The patient's partner mostly helped in dealing with the disease (72.7%). The most desired type of support was assistance in accessing rights (median 5, interquartile range 3-5); however, one-third did not use the support services offered to them. A total of 48% the patients talked to their doctor about the struggle and the accompanying difficulties.

CONCLUSION

Myeloma patients report various impairments in the biopsychosocial components of QoL. Although supportive services are offered, adjustments must be made to optimally meet patients' needs. Further studies should test the effectiveness of different interventions on the biopsychosocial components of the QoL of these patients in the era of new drugs.

摘要

引言

多发性骨髓瘤是一种无法治愈的慢性恶性疾病。疾病本身及其治疗会损害生活质量(QoL),然而在新治疗时代,尚无关于患者生物心理社会需求的数据。在本研究中,我们旨在确定多发性骨髓瘤患者的生物心理社会需求。

方法

这是一项针对2024年以色列多发性骨髓瘤患者的描述性研究。信息基于一份由骨髓瘤患者填写的调查问卷,该问卷调查了身体、心理和社会需求。我们分析了生活质量的主要损害因素及其影响因素、应对疾病的主要支持者、患者报告的心理社会需求以及应对这些困难的困难所在。

结果

多发性骨髓瘤患者报告的主要症状是疲劳。治疗线数增加会使生活质量恶化(非标准化系数:0.987,95%置信区间:0.284;1.691,p = 0.006)。患者的伴侣在应对疾病方面提供的帮助最多(72.7%)。最需要的支持类型是获取权利方面的协助(中位数为5,四分位间距为3 - 5);然而,三分之一的患者未使用提供给他们的支持服务。共有48%的患者与医生谈论了他们面临的挣扎及伴随的困难。

结论

骨髓瘤患者报告了生活质量在生物心理社会方面存在各种损害。尽管提供了支持性服务,但必须进行调整以最佳地满足患者需求。进一步的研究应测试不同干预措施对这些患者在新药时代生活质量的生物心理社会方面的有效性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/cb8a/12258863/70a2851fcbc3/aha-2025-0000-0000-547025_F01.jpg

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