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Living in the twilight zone: A qualitative study on the experiences of patients with advanced cancer obtaining long-term response to immunotherapy or targeted therapy
Zwanenburg,L.C. Suijkerbuijk,K.P.M. van Dongen,S.I. Koldenhof,J.J. van Roozendaal,A.S. van der Lee,M.L. Schellekens,M.P.J.
Zwanenburg,L.C.
Suijkerbuijk,K.P.M.
van Dongen,S.I.
Koldenhof,J.J.
van Roozendaal,A.S.
van der Lee,M.L.
Schellekens,M.P.J.
Abstract
Purpose The introduction of immunotherapy and targeted therapy has drastically improved the life expectancy of patients with advanced cancer. Despite improved survival, obtaining long-term response can be highly distressing and comes with uncertainties that affect several life domains. The aim of this study is to gain a deeper understanding of long-term responders’ lived experiences with obtaining long-term response to immunotherapy or targeted therapy. Methods We conducted an exploratory qualitative study using thematic data analysis. Semi-structured in-depth interviews were conducted with 17 patients with advanced melanoma or lung cancer who had a confirmed response to or long-term stable disease while on immunotherapy or targeted therapy. Results Long-term responders are living in a twilight zone, where they neither feel like a patient, nor feel healthy. This impacts their self-image, interactions with their social environment, and feelings of uncertainty. Due to their uncertain life perspective, long-term responders are going back and forth between hope and despair, while they are longing for their ‘old’ life, several barriers, such as protective behavior of the social environment, force them to adjust to a life with cancer. Conclusion Long-term responders are facing many challenges, such as searching for a renewed identity, dealing with ongoing uncertainty, and having to adapt to a new normal. This emphasizes the importance of providing this new patient group with tailored information and support.
Description
This work was supported by The Dutch Cancer Society (12932).
Date
2023
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Publisher
Research Projects
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Keywords
Immunotherapy, Lung neoplasms, Melanoma, Molecular targeted therapy, Psycho-oncology, Qualitative research, SDG 3 - Good Health and Well-being
Citation
Zwanenburg, L C, Suijkerbuijk, K P M, van Dongen, S I, Koldenhof, J J, van Roozendaal, A S, van der Lee, M L & Schellekens, M P J 2023, 'Living in the twilight zone : A qualitative study on the experiences of patients with advanced cancer obtaining long-term response to immunotherapy or targeted therapy', Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-022-01306-9