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多发性骨髓瘤治疗决策中患者、护理伙伴及医生的观点

Patient, Care Partner, and Physician Voices in Treatment Decision-Making for Multiple Myeloma.

作者信息

Dwyer Orr Lisa, Lin Dee, Wu Bingcao, LeBlanc Thomas W, Faiman Beth, Ahlstrom Jenny, Yung Margaret, Deering Kathleen L, Kulbokas Victoria, Feldman Joshua L, Kline Erika, Biran Noa

机构信息

Janssen Scientific Affairs LLC, Titusville, NJ, USA.

Duke Cancer Institute, Duke University School of Medicine, Durham, NC, USA.

出版信息

Patient Prefer Adherence. 2024 Oct 19;18:2147-2158. doi: 10.2147/PPA.S474722. eCollection 2024.

Abstract

INTRODUCTION

Treatment decision-making for multiple myeloma (MM) is complex. Individuals involved in decision-making may value treatment attributes differently based on their role as a patient, care partner, or physician. This study describes those attributes, and what is most important by role.

METHODS

We conducted a cross-sectional online survey with consenting adult patients with MM, MM care partners, and physicians treating MM. Respondents were recruited from US panels (Inspire and M3 Global Research) between September and December 2022. Survey items were informed by a targeted literature review, qualitative interviews, and a steering committee comprising clinical experts, a patient advocate, patient, and care partner. Descriptive statistics were generated and reported in aggregate.

RESULTS

Email invitations were sent to 8071 Inspire members interested in or posting about MM. Of these, 4427 viewed the invitation, 941 responded, and 156 patients and care partners completed the survey (17% of respondents). For physicians, 5588 were invited via Email by M3 Global Research, with 761 viewing the invitation, 214 accessing the survey link, and 137 completing the survey (64% of respondents). Duration of response, side effects, and patients' quality-of-life (QoL) were the top three treatment attributes selected across the three cohorts; alignment of these attributes was consistent among patients regardless of disease severity. Separately, patients rated QoL and the amount of caregiving needed during/after treatment as the most important factors for future treatment decisions. If more effective MM treatments were offered, care partners were more willing to assume greater family burden (77%) compared to patients (49%), and patients were more accepting of potential serious side effects (50%) than were care partners (34%).

CONCLUSION

Patients with MM, care partners, and physicians consider and value various treatment decision-making factors. Recognizing and addressing these differences is critical to meeting patients' preferences, needs, and optimizing patient outcomes.

摘要

引言

多发性骨髓瘤(MM)的治疗决策很复杂。参与决策的个人可能因其作为患者、护理伙伴或医生的角色不同,而对治疗属性有不同的重视程度。本研究描述了这些属性,以及按角色划分最重要的属性。

方法

我们对成年MM患者、MM护理伙伴以及治疗MM的医生进行了一项横断面在线调查,调查对象均表示同意参与。2022年9月至12月期间,从美国的小组(Inspire和M3全球研究公司)招募了受访者。调查项目基于有针对性的文献综述、定性访谈以及由临床专家、患者权益倡导者、患者和护理伙伴组成的指导委员会制定。生成描述性统计数据并进行汇总报告。

结果

向8071名对MM感兴趣或发布过MM相关内容的Inspire成员发送了电子邮件邀请。其中,4427人查看了邀请,941人回复,156名患者和护理伙伴完成了调查(占回复者的17%)。对于医生,M3全球研究公司通过电子邮件邀请了5588人,761人查看了邀请,214人访问了调查链接,137人完成了调查(占回复者的64%)。反应持续时间、副作用和患者的生活质量(QoL)是三个队列中选择的前三大治疗属性;无论疾病严重程度如何,这些属性在患者中保持一致。另外,患者将生活质量以及治疗期间/治疗后所需的护理量视为未来治疗决策的最重要因素。如果提供更有效的MM治疗方法,与患者(49%)相比,护理伙伴更愿意承担更大的家庭负担(77%),并且患者(50%)比护理伙伴(34%)更能接受潜在的严重副作用。

结论

MM患者、护理伙伴和医生会考虑并重视各种治疗决策因素。认识并解决这些差异对于满足患者的偏好、需求以及优化患者治疗效果至关重要。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/852b/11498144/20c2a504a0e0/PPA-18-2147-g0001.jpg

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