Abstract：
Chimeric Antigen Receptor T-cell (CAR-T) therapy has revolutionized the treatment of patients with hematologic malignancies, yet treatment may coincide with the potential for life-threatening toxicities. Currently, no studies have investigated how oncologists communicate with patients about CAR-T therapy or what patients and their caregivers want to know prior to consenting for CAR-T therapy. This study characterizes the content of oncologist communication with patients and caregivers about the risks and benefits of CAR-T therapy and explore the information preferences of patients and their caregivers about CAR-T therapy. We conducted a multimethod study of 20 patients with hematologic malignancies referred for CAR-T therapy at the Massachusetts General Hospital and 10 caregivers. We audio recorded the initial outpatient visit with the oncologist to review and sign consent for CAR-T therapy. We subsequently surveyed patients and caregivers about information gaps that remained after consent. We then interviewed patients and caregiver about their perceptions of oncologist communication and information preferences after the consent visit, 1 month, and 3 months post-CAR-T therapy treatment. Qualitative data analysis was conducted using the framework approach. Six major themes regarding communication about CAR-T therapy were identified: (1) oncologists create a narrative of power and innovation about CAR-T therapy, (2) oncologists set clear expectations regarding CAR-T therapy, (3) oncologists preferentially discuss positive treatment outcomes and less frequently address treatment failures or uncertainties, (4) oncologists couple their discussion about risks of CAR-T therapy with assurances about risk mitigation strategies, (5) oncologists engage in empathetic communication throughout the consent visit, (6) patients and caregivers vary in their preferences regarding communication about CAR-T therapy but largely favor a positive discourse during the consent visit and (7) patients who completed CAR-T therapy and their caregivers report significant knowledge gaps during and after treatment. Overall, patients and caregivers felt well informed about CAR T-therapy yet identified communication gaps regarding, advanced care planning, treatment failure and treatment toxicities. A predominantly positive discourse between patients, caregivers, and oncologists around CAR-T therapy leaves patients and caregivers with significant knowledge gaps about negative outcomes. Further research is needed to help oncologists communicate about treatment uncertainties and help patients and their caregivers prepare for negative outcomes of CAR-T therapy.
摘要：
背景：嵌合抗原受体T细胞（CAR-T）疗法彻底改变了血液系统恶性肿瘤患者的治疗方法，然而,治疗可能与潜在的危及生命的毒性反应相吻合.目前,没有研究调查肿瘤学家如何与患者就CAR-T疗法进行沟通,或者患者及其护理人员在同意CAR-T疗法之前想要了解什么.
目的：本研究描述了肿瘤学家与患者和护理人员就CAR-T治疗的风险和益处进行沟通的内容，并探讨了患者及其护理人员对CAR-T治疗的信息偏好。
方法：我们对马萨诸塞州总医院转诊接受CAR-T治疗的20例血液系统恶性肿瘤患者和10名护理人员进行了多方法研究。我们音频记录了肿瘤科医生的初次门诊就诊，以审查并签署CAR-T治疗的同意书。随后，我们调查了患者和护理人员在同意后仍然存在的信息差距。然后，我们采访了患者和护理人员，了解他们在同意访问后对肿瘤学家沟通和信息偏好的看法。1个月,CAR-T治疗后3个月。使用框架方法进行定性数据分析。
结果：确定了关于CAR-T疗法交流的六个主要主题：（1）肿瘤学家对CAR-T疗法的力量和创新进行了叙述，(2)肿瘤学家对CAR-T疗法设定了明确的期望，（3）肿瘤学家优先讨论积极的治疗结果，而较少地解决治疗失败或不确定性，（4）肿瘤学家将他们关于CAR-T疗法风险的讨论与关于风险缓解策略的保证相结合，（5）肿瘤学家在整个同意访问中进行移情沟通，(6)患者和照顾者在关于CAR-T治疗的沟通方面的偏好不同,但在同意访问期间在很大程度上倾向于积极的话语;(7)完成CAR-T治疗的患者及其照顾者在治疗期间和之后报告了显著的知识差距。总的来说,患者和护理人员对CAR-T疗法了解得很好，但发现了沟通差距，高级护理计划，治疗失败和治疗毒性。
结论：患者之间主要是积极的话语，看护者,而围绕CAR-T疗法的肿瘤学家给患者和护理人员留下了关于负面结果的显著知识差距.需要进一步的研究来帮助肿瘤学家沟通治疗的不确定性，并帮助患者及其护理人员为CAR-T治疗的负面结果做好准备。
目的：本研究描述了肿瘤学家与患者和护理人员就CAR-T治疗的风险和益处进行沟通的内容，并探讨了患者及其护理人员对CAR-T治疗的信息偏好。
方法：我们对马萨诸塞州总医院转诊接受CAR-T治疗的20例血液系统恶性肿瘤患者和10名护理人员进行了多方法研究。我们音频记录了肿瘤科医生的初次门诊就诊，以审查并签署CAR-T治疗的同意书。随后，我们调查了患者和护理人员在同意后仍然存在的信息差距。然后，我们采访了患者和护理人员，了解他们在同意访问后对肿瘤学家沟通和信息偏好的看法。1个月,CAR-T治疗后3个月。使用框架方法进行定性数据分析。
结果：确定了关于CAR-T疗法交流的六个主要主题：（1）肿瘤学家对CAR-T疗法的力量和创新进行了叙述，(2)肿瘤学家对CAR-T疗法设定了明确的期望，（3）肿瘤学家优先讨论积极的治疗结果，而较少地解决治疗失败或不确定性，（4）肿瘤学家将他们关于CAR-T疗法风险的讨论与关于风险缓解策略的保证相结合，（5）肿瘤学家在整个同意访问中进行移情沟通，(6)患者和照顾者在关于CAR-T治疗的沟通方面的偏好不同,但在同意访问期间在很大程度上倾向于积极的话语;(7)完成CAR-T治疗的患者及其照顾者在治疗期间和之后报告了显著的知识差距。总的来说,患者和护理人员对CAR-T疗法了解得很好，但发现了沟通差距，高级护理计划，治疗失败和治疗毒性。
结论：患者之间主要是积极的话语，看护者,而围绕CAR-T疗法的肿瘤学家给患者和护理人员留下了关于负面结果的显著知识差距.需要进一步的研究来帮助肿瘤学家沟通治疗的不确定性，并帮助患者及其护理人员为CAR-T治疗的负面结果做好准备。
