David Levy1,2, Haryana M Dhillon2, Anna Lomax1, Michael Marthick1, Catriona McNeil1,3, Steven Kao1,3, Judith Lacey4,5. 1. Chris O'Brien Lifehouse Comprehensive Cancer Centre, Missenden Rd, Camperdown, NSW, Australia. 2. Centre for Medical Psychology and Evidence-Based Decision-Making, School of Psychology, University of Sydney, Sydney, NSW, Australia. 3. Sydney Medical School, University of Sydney, Sydney, NSW, Australia. 4. Chris O'Brien Lifehouse Comprehensive Cancer Centre, Missenden Rd, Camperdown, NSW, Australia. Judith.Lacey@lh.org.au. 5. Sydney Medical School, University of Sydney, Sydney, NSW, Australia. Judith.Lacey@lh.org.au.
Abstract
OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Despite progress in melanoma patient treatment and outcomes, these patients face sustained uncertainty about their disease trajectory.
OBJECTIVE: 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 melanomapatients 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. METHODS: 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. RESULTS: Three overarching themes were identified; here, we report the first and most dominant theme: how metastatic melanomapatients live within uncertain spaces. Although immunotherapy increases overall survival, metastatic melanomapatients live within an uncertain spectrum. They confront uncertainty related to immunotherapy treatment, their disease trajectory, family relationships, and decision-making. Melanomapatients attempt to normalize their lives, engaging in their usual activities. Uncertainty increases prior to active treatment and intensifies during investigation phases. CONCLUSIONS: Despite progress in melanomapatient treatment and outcomes, these patients face sustained uncertainty about their disease trajectory.
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