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患者、家庭成员及医生对急性髓系白血病治疗决策的观点与体验

Patient, Family Member and Physician Perspectives and Experiences with AML Treatment Decision-Making.

作者信息

LeBlanc Thomas W, Russell Nigel H, Hernandez-Aldama Loriana, Panter Charlotte, Bell Timothy J, Welch Verna, Vega Diana Merino, O'Hara Louise, Stein Julia, Barclay Melissa, Peloquin Francois, Brown Andrew, Healy Jasmine, Morgan Lucy, Gater Adam, Hohman Ryan, Amer Karim, Maze Dawn, Walter Roland B

机构信息

Division of Hematologic Malignancies and Cellular Therapy, Department of Medicine, Duke University School of Medicine, Durham, USA.

Department of Haematology, Guy's Hospital, London, UK.

出版信息

Oncol Ther. 2022 Dec;10(2):421-440. doi: 10.1007/s40487-022-00200-9. Epub 2022 Jun 13.

Abstract

INTRODUCTION

Treatment decisions in older adults with acute myeloid leukemia (AML) are challenging, particularly for those who are not candidates for intensive chemotherapy (IC), and the trade-offs patients, their families and physicians consider when choosing a treatment option are not well understood. This qualitative research explored the value of extending survival and the treatment decision-making process from a multi-stakeholder perspective.

METHODS

Overall, 28 patients with AML (≥ 65 years old, unsuitable for IC), 25 of their relatives and 10 independent physicians from the US, UK and Canada took part in one-on-one, 60-minute qualitative interviews.

RESULTS

Across all stakeholders, improved health-related quality of life (HRQoL), extended survival and relief of AML symptoms were recognized as most important in AML treatment decision-making. However, extending survival in 'good health' was more important than extending survival alone, particularly because of the extra time it gives patients and their relatives together, and allows patients to achieve important goals. Patients' limited understanding of available treatment options, paired with incorrect perceptions of treatment side effects, impacted their involvement in the treatment decision-making process. Patients and physicians perceived physicians to have the most influence in the decision-making process despite their priorities not always aligning.

CONCLUSION

These findings illustrate the importance of having structured discussions which explicitly assess patients' goals and their understanding and expectations of treatments and also the need for patient friendly resources about the lived experience of AML and available treatment options. These measures will help to ensure that patients are fully involved in the shared decision-making process.

摘要

引言

老年急性髓系白血病(AML)患者的治疗决策具有挑战性,对于那些不适合强化化疗(IC)的患者而言尤其如此,而患者、其家属和医生在选择治疗方案时所考虑的权衡因素尚未得到充分理解。这项定性研究从多利益相关方的角度探讨了延长生存期的价值和治疗决策过程。

方法

总体而言,来自美国、英国和加拿大的28例AML患者(≥65岁,不适合IC)、其中25例患者的亲属以及10名独立医生参与了时长60分钟的一对一的定性访谈。

结果

在所有利益相关方中,改善健康相关生活质量(HRQoL)、延长生存期和缓解AML症状在AML治疗决策中被认为是最重要的。然而,在“健康状况良好”的情况下延长生存期比单纯延长生存期更重要,特别是因为它为患者及其亲属提供了额外相处的时间,并且使患者能够实现重要目标。患者对可用治疗方案的了解有限,再加上对治疗副作用的错误认知,影响了他们参与治疗决策过程。患者和医生认为医生在决策过程中影响最大,尽管他们的优先事项并不总是一致。

结论

这些发现表明了进行结构化讨论的重要性,这种讨论应明确评估患者的目标以及他们对治疗的理解和期望,同时也表明需要提供有关AML实际体验和可用治疗方案的患者友好型资源。这些措施将有助于确保患者充分参与共同决策过程。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4e6c/9681959/12111d3f9496/40487_2022_200_Fig1_HTML.jpg

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