Chris O'Brien Lifehouse Comprehensive Cancer Centre, Missenden Rd, Camperdown, NSW, Australia.
Centre for Medical Psychology and Evidence-Based Decision-Making, School of Psychology, University of Sydney, Sydney, NSW, Australia.
Support Care Cancer. 2019 May;27(5):1845-1852. doi: 10.1007/s00520-018-4443-3. Epub 2018 Sep 4.
Little is known about the lived experiences of patients with metastatic melanoma undergoing checkpoint inhibitor treatment. We conducted a feasibility study of a supportive care intervention for melanoma patients being treated with pembrolizumab. Here, we report a secondary objective of the study, which was to explore the lived experience of being on pembrolizumab treatment for advanced melanoma.
Twenty-eight participants with metastatic melanoma were recruited across two cohorts, all receiving 3-weekly immunotherapy treatment. Semi-structured interviews were conducted with 26 participants once at 9 weeks. Thematic analysis using interpretative phenomenological analysis (IPA) was performed with multiple iterations of data review to achieve consensus.
Three overarching themes were identified; here, we report the first and most dominant theme: how metastatic melanoma patients live within uncertain spaces. Although immunotherapy increases overall survival, metastatic melanoma patients live within an uncertain spectrum. They confront uncertainty related to immunotherapy treatment, their disease trajectory, family relationships, and decision-making. Melanoma patients attempt to normalize their lives, engaging in their usual activities. Uncertainty increases prior to active treatment and intensifies during investigation phases.
Despite progress in melanoma patient treatment and outcomes, these patients face sustained uncertainty about their disease trajectory.
对于接受检查点抑制剂治疗的转移性黑色素瘤患者的生活体验，我们知之甚少。我们对接受 pembrolizumab 治疗的黑色素瘤患者进行了支持性护理干预的可行性研究。在这里，我们报告了该研究的次要目标，即探讨接受 pembrolizumab 治疗晚期黑色素瘤的生活体验。
在两个队列中招募了 28 名转移性黑色素瘤患者，所有患者均接受 3 周免疫治疗。对 26 名参与者在 9 周时进行了一次半结构式访谈。使用解释性现象学分析（IPA）进行主题分析，通过多次数据审查达到共识。
确定了三个总体主题；在这里，我们报告了第一个也是最主要的主题：转移性黑色素瘤患者如何在不确定的空间中生活。虽然免疫疗法提高了总体生存率，但转移性黑色素瘤患者生活在不确定的范围内。他们面临与免疫治疗、疾病轨迹、家庭关系和决策相关的不确定性。黑色素瘤患者试图使生活正常化，参与他们的日常活动。在积极治疗前不确定性增加，并在调查阶段加剧。
尽管黑色素瘤患者的治疗和预后取得了进展，但这些患者仍然面临着对疾病轨迹的持续不确定性。
