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造血干细胞移植前后患者的姑息治疗:关于患者对未满足需求的认知与经历以及对姑息治疗参与态度的定性研究

Palliative care for patients around the time of haematopoietic stem cell transplant: a qualitative study of patients' perceptions and experiences of unmet need and attitudes towards palliative care involvement.

作者信息

Gemmell Rebecca, Halley Angela, Stevens Anna-Marie, Allam Alison, Perkins Margaret, Ethell Mark, Sriskandarajah Priya, Droney Joanne

机构信息

Palliative Care Department, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK.

Public and Patient Representative, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK.

出版信息

Support Care Cancer. 2022 Mar;30(3):2253-2261. doi: 10.1007/s00520-021-06556-4. Epub 2021 Oct 29.

DOI:10.1007/s00520-021-06556-4
PMID:34716484
Abstract

BACKGROUND

Haemato-oncology patients are likely to be referred later to palliative care than patients with solid tumours, despite experiencing similar symptom burden. Patients prior to stem cell transplant may benefit from symptom control, advance care planning and shared decision-making, and previous studies have demonstrated feasibility and benefit of such a service. However, the views of patients are not yet established, and are vital to ensure acceptability of the service.

AIMS

To identify areas where a palliative care team may help to support patients being considered for a stem cell transplant, and to explore the attitudes and perceptions of patients towards palliative care at this time.

DESIGN

A qualitative study including interviews (N = 12) and a focus group (N = 4) for patients pre- and post-transplant, using a semi-structured format via telephone, online video-conferencing and face-to-face discussions. Recordings were transcribed and analysed using thematic analysis.

SETTING

A tertiary cancer centre in the UK.

FINDINGS

Themes identified were the following: Identified needs, Information and decision-making, Importance of relationships, Changing perceptions of what palliative care means, and The future. Patients associate palliative care with terminal care due to indirect experiences. Patients were open to palliative care once its purpose was explained and described emotional and physical needs relevant to early palliative care.

CONCLUSIONS

The involvement of early palliative care alongside haematology treatment prior to stem cell transplant may improve quality of life for patients and facilitate shared decision-making at a crucial stage of treatment. Early palliative care should be offered alongside haematology care around the time of stem cell transplant, with information provided to patients regarding its role.

摘要

背景

血液肿瘤患者尽管症状负担与实体瘤患者相似,但比实体瘤患者更晚被转介至姑息治疗。干细胞移植前的患者可能会从症状控制、预先护理计划和共同决策中受益,并且先前的研究已证明此类服务的可行性和益处。然而,患者的观点尚未明确,而这对于确保服务的可接受性至关重要。

目的

确定姑息治疗团队可帮助支持考虑进行干细胞移植患者的领域,并探讨此时患者对姑息治疗的态度和看法。

设计

一项定性研究,包括对移植前后患者进行访谈(N = 12)和焦点小组讨论(N = 4),通过电话、在线视频会议和面对面讨论采用半结构化形式。录音经转录后使用主题分析法进行分析。

地点

英国一家三级癌症中心。

结果

确定的主题如下:已确定的需求、信息与决策、关系的重要性、对姑息治疗含义的认知变化以及未来。由于间接经历,患者将姑息治疗与临终关怀联系在一起。一旦解释了姑息治疗的目的并描述了与早期姑息治疗相关的情感和身体需求,患者对其持开放态度。

结论

在干细胞移植前,早期姑息治疗与血液学治疗同时开展,可能会改善患者的生活质量,并在治疗的关键阶段促进共同决策。应在干细胞移植前后,将早期姑息治疗与血液学护理同时提供给患者,并向患者提供有关其作用的信息。

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