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CAR-T 疗法患者与照护者体验的定性服务评估:服务发展建议及对姑息治疗团队的意义

英文原题:A qualitative service evaluation of patient and caregiver experiences of CAR-T therapy: Recommendations for service development and implications for palliative care teams.

查看英文原题

A qualitative service evaluation of patient and caregiver experiences of CAR-T therapy: Recommendations for service development and implications for palliative care teams.

PubMed 2022/11/25(内容时间) Palliat Med Q1 · IF 6.4(JCR 2025)

分数与星级只用于站内排序 —— 不代表疗效、安全性或个人适用性。

研究概要

患者和照护者将从姑息治疗、联合健康专业人员和心理学提供的早期和持续支持中获益。随着 CAR-T 疗法的适应证不断扩大,迫切需要纳入患者报告结局数据的多中心研究,以确保提供以患者为中心的服务。

研究思路结论见上方概要

CAR-T 细胞疗法是难治性血液系统恶性肿瘤的一种可能挽救生命的治疗方法。在国际上,CAR-T 服务正在快速发展。尽管如此,关于接受新型免疫治疗患者生活体验的研究仍然有限。对于他们的支持性照护需求知之甚少。因此,专门的姑息和支持性照护服务可能未被纳入考虑。

探讨患者和照护者对CAR-T 治疗的体验,并识别未满足的需求,为服务发展提供依据。

一项定性纵向服务评估。2020年12月至2021年3月期间,对患者(n = 10)和家庭照护者(n = 4)进行了16次访谈。主题分析以建构主义方法为基础。地点/参与者:所有在一家英国中心接受CAR-T 治疗的患者和照护者均符合条件。在半结构化访谈在特定时间点进行:输注前、输注后一个月以及治疗后随访(5-18个月)。

已确定的主题描述了 CAR-T 治疗的独特挑战。从转诊时起,患者就有广泛的支持性照护需求。最初,这被归因于既往接受过多种失败的治疗。随后,CAR-T 副作用影响了生活质量和身体功能。整个过程中都描述了因预后不确定性而导致的显著心理负担。患者和照护者报告称,一名专职专科护士——一个专业、始终如一的联系点——是必不可少的。

展开英文摘要原文

Chimeric Antigen-Receptor-T-cell (CAR-T) therapy is a potentially life-saving treatment for refractory haematological malignancies. Internationally, CAR-T services are undergoing rapid development. Despite this, research on the lived experiences of patients receiving novel immunotherapies is limited. Little is known about their supportive care needs. Consequently, dedicated palliative and supportive care services may not be considered. AIM: To explore the patient and caregiver experience of CAR-T therapy and identify unmet needs to inform service development. DESIGN: A qualitative longitudinal service evaluation. Sixteen interviews were conducted between December 2020 and March 2021 with patients ( n = 10) and family caregivers ( n = 4). Thematic analysis was underpinned by a constructivist approach. SETTING/PARTICIPANTS: All patients and caregivers attending one UK centre for CAR-T therapy were eligible. Semi-structured interviews were conducted at specific time points: prior to infusion, one month after infusion and follow-up post-treatment (5-18 months).

Identified themes described the unique challenges of CAR-T therapy. From the point of referral patients had a wide range of supportive care needs. Initially, this was attributed to prior receipt of multiple failed treatments. Subsequently, CAR-T side-effects impacted on quality-of-life and physical function. Significant psychological morbidity from prognostic uncertainty was described throughout. Patients and caregivers reported that a dedicated nurse specialist - an expert, consistent point of contact - was essential.

Patients and caregivers would benefit from early and ongoing support from palliative care, allied-health professionals and psychology. As indications for CAR-T therapy expand, there is an urgent need for multi-centre studies incorporating patient-reported outcome data to ensure patient-centred service delivery.

论文信息

作者
Stenson CL、Vidrine J、Dewhurst F、Osborne W、Menne T、Stocker R
第一作者单位
Population Health Sciences Institute, Faculty of Medical Sciences, Campus for Ageing and Vitality, Newcastle University, Newcastle upon Tyne, UK.United Kingdom
通讯作者单位
School of Biomedical, Nutritional and Sport Sciences, Faculty of Medical Sciences, Dame Margaret Barbour Building, Newcastle University, Newcastle upon Tyne, UK.United Kingdom
文献类型
非美国政府资助研究
期刊
Palliative medicine2023 Feb
原文标识
PubMed 36428287 · DOI 10.1177/02692163221138880