Malaghan Institute of Medical Research, Wellington, New Zealand
Te Herenga Waka - Victoria University of Wellington, Wellington, New Zealand.
BMJ Open. 2024 Jan 23;14(1):e071112. doi: 10.1136/bmjopen-2022-071112.
OBJECTIVES: RE-TELL is a qualitative study, which aims to understand patient, support person, clinician and coordinator experiences and perspectives of chimeric antigen receptor (CAR) T-cell therapy, to inform design of a clinical CAR T-cell service in Aotearoa New Zealand. DESIGN: Semistructured qualitative interviews focused on domains of: experience through treatment, elements that work well and those that could be improved on. Interviews used thematic analysis to identify key themes. A workshop was held to obtain participants' reflections on interim analysis and proposed improvements. PARTICIPANTS: New Zealanders with experience of CAR T-cell therapy, including recipients, support persons, clinicians and coordinators. RESULTS: We interviewed 19 participants comprising 5 CAR T-cell recipients, 3 support persons, 6 clinicians and 5 coordinators. Four participants identified as Māori. Thematic analysis identified three global themes. The first, 'sociocultural factors impact CAR T access', identified potential sources of inequity including geographic, financial and informed consent barriers. The second, 'varying emotions, roles and enablers', identified an easier treatment experience compared with alternatives; an underwhelming cell administration process; frustration with inpatient monitoring; burden on support persons and importance of 'bridge' organisations such as charities and patient support groups. Lastly, 'golden opportunities: reimagining CAR T service delivery', suggested: improved geographical access to CAR T-cell therapy, while retaining consolidated clinician experience; a 'dashboard' with information on CAR T-cell treatment, time frames and manufacture; a health navigator to co-ordinate non-medical aspects of treatment and signpost care; embedding of indigenous data sovereignty and ownership of cells; a cell infusion ceremony, incorporating family involvement and Māori cultural elements and outpatient administration and monitoring where possible. CONCLUSION: This study documented the current experience of New Zealanders receiving CAR T-cell therapy and identified opportunities for future service development. These insights are relevant to service design within Aotearoa New Zealand, and other countries developing equitable CAR T-cell services.
目的:RE-TELL 是一项定性研究,旨在了解患者、支持人员、临床医生和协调员对嵌合抗原受体(CAR)T 细胞治疗的经验和看法,为新西兰奥特亚罗瓦的临床 CAR T 细胞服务的设计提供信息。
设计:半结构式定性访谈侧重于以下领域:治疗过程中的经验、效果良好的因素和可以改进的因素。访谈采用主题分析来确定关键主题。举办了一次研讨会,以获得参与者对中期分析和拟议改进的反馈。
参与者:有 CAR T 细胞治疗经验的新西兰人,包括接受者、支持人员、临床医生和协调员。
结果:我们采访了 19 名参与者,其中包括 5 名 CAR T 细胞接受者、3 名支持人员、6 名临床医生和 5 名协调员。有 4 名参与者自认为是毛利人。主题分析确定了三个全球主题。第一个主题是“社会文化因素影响 CAR T 治疗的可及性”,确定了潜在的不公平来源,包括地理、财务和知情同意障碍。第二个主题是“不同的情绪、角色和促进因素”,认为与替代治疗方法相比,CAR T 治疗的体验更容易;细胞输注过程令人失望;对住院监测感到沮丧;支持人员负担过重;慈善机构和患者支持团体等“桥梁”组织的重要性。最后一个主题是“黄金机会:重新想象 CAR T 服务提供”,建议:改善 CAR T 细胞治疗的地理可及性,同时保留集中的临床医生经验;一个带有 CAR T 细胞治疗、时间框架和制造信息的“仪表盘”;一个健康导航员来协调治疗的非医疗方面,并提供护理建议;嵌入土著数据主权和细胞所有权;细胞输注仪式,纳入家庭参与和毛利文化元素,并尽可能在门诊进行管理和监测。
结论:本研究记录了新西兰人接受 CAR T 细胞治疗的当前经验,并确定了未来服务发展的机会。这些见解与新西兰奥特亚罗瓦的服务设计以及其他正在开发公平的 CAR T 细胞服务的国家有关。
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