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.

Autor: Zwanenburg LC; Department of Scientific Research, Helen Dowling Institute: Centre for Psycho-Oncology, Bilthoven, The Netherlands. lzwanenburg@hdi.nl.; Department of Medical and Clinical Psychology, Tilburg University School of Social and Behavioral Sciences, Tilburg, The Netherlands. lzwanenburg@hdi.nl., Suijkerbuijk KPM; Department of Medical Oncology, University Medical Centre in Utrecht, Utrecht, The Netherlands., van Dongen SI; Department of Scientific Research, Helen Dowling Institute: Centre for Psycho-Oncology, Bilthoven, The Netherlands.; Department of Public Health, Erasmus Medical Centre, Rotterdam, The Netherlands., Koldenhof JJ; Department of Medical Oncology, University Medical Centre in Utrecht, Utrecht, The Netherlands., van Roozendaal AS; Department of Scientific Research, Helen Dowling Institute: Centre for Psycho-Oncology, Bilthoven, The Netherlands., van der Lee ML; Department of Scientific Research, Helen Dowling Institute: Centre for Psycho-Oncology, Bilthoven, The Netherlands.; Department of Medical and Clinical Psychology, Tilburg University School of Social and Behavioral Sciences, Tilburg, The Netherlands., Schellekens MPJ; Department of Scientific Research, Helen Dowling Institute: Centre for Psycho-Oncology, Bilthoven, The Netherlands.; Department of Medical and Clinical Psychology, Tilburg University School of Social and Behavioral Sciences, Tilburg, The Netherlands.
Jazyk: angličtina
Zdroj: Journal of cancer survivorship : research and practice [J Cancer Surviv] 2024 Jun; Vol. 18 (3), pp. 750-760. Date of Electronic Publication: 2022 Dec 10.
DOI: 10.1007/s11764-022-01306-9
Abstrakt: 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.
Implications for Cancer Survivors: Healthcare professionals can support patients by normalizing their feelings and providing space for varying emotions. Using patient-tailored scan frequencies could help temper fear of progression.
(© 2022. The Author(s).)
Databáze: MEDLINE
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