Milne Donna, Hyatt Amelia, Billett Alex, Gough Karla, Krishnasamy Mei
Author Affiliations: Department Cancer Experiences Research, Peter MacCallum Cancer Centre (Drs Milne and Gough and Mss Billett and Hyatt); Department of Nursing/Centre for Cancer Research, University of Melbourne (Dr Krishnasamy); and Victorian Comprehensive Cancer Centre (Dr Krishnasamy), Melbourne, Australia.
Cancer Nurs. 2020 Mar/Apr;43(2):E97-E104. doi: 10.1097/NCC.0000000000000683.
Recent advances in the development of immunotherapy drugs have resulted in durable responses and improved overall survival for a proportion of patients with advanced melanoma; however, toxicities can be potentially life-threatening. The patients' family and friends (carers) are relied upon to support patients at home post treatment; however, we know little about their experiences.
This study aimed to understand the experiences of patients with advanced melanoma who received immunotherapy and their carers; and to explore the impact of immunotherapy treatment on patients' and carers' quality of life (QoL).
A cross-sectional, exploratory design was employed. Semi-structured interviews were conducted with patients: diagnosed with stage IV melanoma, attending an Australian public cancer hospital, had completed or were receiving treatment with immunotherapies; and the people caring for them at home.
Patients (n = 22) described how immunotherapy impacted emotional health, functional ability; and had damaging economic consequences. Fatigue was reported consistently as having a considerable negative influence across all domains of QoL. Carers (n = 9) were anxious about their ability to correctly identify, report and manage side effects at home.
Results demonstrate how immunotherapy can impact the QoL of both patients and carers, either directly through toxicities or indirectly through mechanisms such as stress, financial toxicity, or fatigue that limits participation in life activities.
Supportive care resources and interventions are needed for those receiving immunotherapy to minimise negative impacts on QoL. Carers likewise require better preparation and information to assist in identifying potential treatment toxicities and ensure patient safety.
免疫治疗药物研发的最新进展已使一部分晚期黑色素瘤患者产生持久反应并改善了总生存期；然而，毒性反应可能危及生命。患者的家人和朋友（护理者）需要在治疗后在家中支持患者；然而，我们对他们的经历知之甚少。
本研究旨在了解接受免疫治疗的晚期黑色素瘤患者及其护理者的经历；并探讨免疫治疗对患者和护理者生活质量（QoL）的影响。
采用横断面探索性设计。对以下患者进行半结构化访谈：被诊断为IV期黑色素瘤，就诊于一家澳大利亚公立癌症医院，已完成或正在接受免疫治疗；以及在家中照顾他们的人。
患者（n = 22）描述了免疫治疗如何影响情绪健康、功能能力；并产生了有害的经济后果。疲劳被一致报告为对生活质量的所有领域都有相当大的负面影响。护理者（n = 9）对自己在家中正确识别、报告和管理副作用的能力感到焦虑。
结果表明免疫治疗如何直接通过毒性反应或间接通过压力、经济毒性或疲劳等限制参与生活活动的机制影响患者和护理者的生活质量。
需要为接受免疫治疗的患者提供支持性护理资源和干预措施，以尽量减少对生活质量的负面影响。护理者同样需要更好的准备和信息，以协助识别潜在的治疗毒性反应并确保患者安全。
