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Published in: Supportive Care in Cancer 5/2019

01-05-2019 | Original Article

Certainty within uncertainty: a qualitative study of the experience of metastatic melanoma patients undergoing pembrolizumab immunotherapy

Authors: David Levy, Haryana M. Dhillon, Anna Lomax, Michael Marthick, Catriona McNeil, Steven Kao, Judith Lacey

Published in: Supportive Care in Cancer | Issue 5/2019

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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.
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Metadata
Title
Certainty within uncertainty: a qualitative study of the experience of metastatic melanoma patients undergoing pembrolizumab immunotherapy
Authors
David Levy
Haryana M. Dhillon
Anna Lomax
Michael Marthick
Catriona McNeil
Steven Kao
Judith Lacey
Publication date
01-05-2019
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 5/2019
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-018-4443-3

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