Uncertainty and hope in people with metastatic uveal melanoma in the era of immunotherapy and targeted treatments: a theory-based qualitative study

Abstract Background The advent of immunotherapies and targeted treatments has improved survival for some people with metastatic cancer but also increased prognostic uncertainty. To inform clinician-patient communication and supportive care, this study explored uncertainty-related coping among people...

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Main Authors: Tim Luckett, Carrie-Anne Ng, Julia Lai-Kwon, Damien Kee, Brendan Mulhern, Anthony M. Joshua
Format: Article
Language:English
Published: BMC 2025-05-01
Series:BMC Cancer
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Online Access:https://doi.org/10.1186/s12885-025-14368-6
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author Tim Luckett
Carrie-Anne Ng
Julia Lai-Kwon
Damien Kee
Brendan Mulhern
Anthony M. Joshua
author_facet Tim Luckett
Carrie-Anne Ng
Julia Lai-Kwon
Damien Kee
Brendan Mulhern
Anthony M. Joshua
author_sort Tim Luckett
collection DOAJ
description Abstract Background The advent of immunotherapies and targeted treatments has improved survival for some people with metastatic cancer but also increased prognostic uncertainty. To inform clinician-patient communication and supportive care, this study explored uncertainty-related coping among people with metastatic uveal melanoma (mUM) – a disease for which treatments have emerged especially suddenly. Methods A qualitative approach was taken using semi-structured interviews. Participants with mUM were recruited through consumer organisations internationally. Interviews explored participant perspectives on the impacts of uncertainty and their related coping strategies. Analysis involved inductive coding followed by deductive coding against Mishel’s (1988) theoretical framework of uncertainty in illness. Results Seventeen people participated, including 10 from Australia. Participants described experiencing uncertainty as disempowering but also leveraged the opportunity it presented for remaining hopeful. Some participants used meta-cognition– alluded to as ‘tricking’ or ‘fooling’ themselves - to manage inconsistency between hoping for an exceptional response and accepting that benefits were likely to be modest at best. Most participants were able to maintain everyday normalcy but struggled to discuss their illness and treatment with family and friends. Participants reported heightened anxiety in the lead-up to routine scans and while awaiting results. Conclusions Coping with uncertainty in the era of immunotherapy and targeted treatments involves ‘hoping for the best while preparing for the worst’. Supportive care is especially needed at the time of scans. Some patients may also benefit from help with talking to their social networks. Head-to-head comparisons are needed of differing psychological interventions.
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spelling doaj-art-a09452d63d004cbcae4253ede94cd2922025-08-20T03:16:55ZengBMCBMC Cancer1471-24072025-05-0125111410.1186/s12885-025-14368-6Uncertainty and hope in people with metastatic uveal melanoma in the era of immunotherapy and targeted treatments: a theory-based qualitative studyTim Luckett0Carrie-Anne Ng1Julia Lai-Kwon2Damien Kee3Brendan Mulhern4Anthony M. Joshua5Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology SydneyCentre for Health Economics Research and Evaluation (CHERE), Faculty of Health, University of Technology SydneyDepartment of Medical Oncology, Peter MacCallum Cancer CentreDepartment of Medical Oncology, Peter MacCallum Cancer CentreCentre for Health Economics Research and Evaluation (CHERE), Faculty of Health, University of Technology SydneyThe Kinghorn Cancer Centre, Saint Vincent’s HospitalAbstract Background The advent of immunotherapies and targeted treatments has improved survival for some people with metastatic cancer but also increased prognostic uncertainty. To inform clinician-patient communication and supportive care, this study explored uncertainty-related coping among people with metastatic uveal melanoma (mUM) – a disease for which treatments have emerged especially suddenly. Methods A qualitative approach was taken using semi-structured interviews. Participants with mUM were recruited through consumer organisations internationally. Interviews explored participant perspectives on the impacts of uncertainty and their related coping strategies. Analysis involved inductive coding followed by deductive coding against Mishel’s (1988) theoretical framework of uncertainty in illness. Results Seventeen people participated, including 10 from Australia. Participants described experiencing uncertainty as disempowering but also leveraged the opportunity it presented for remaining hopeful. Some participants used meta-cognition– alluded to as ‘tricking’ or ‘fooling’ themselves - to manage inconsistency between hoping for an exceptional response and accepting that benefits were likely to be modest at best. Most participants were able to maintain everyday normalcy but struggled to discuss their illness and treatment with family and friends. Participants reported heightened anxiety in the lead-up to routine scans and while awaiting results. Conclusions Coping with uncertainty in the era of immunotherapy and targeted treatments involves ‘hoping for the best while preparing for the worst’. Supportive care is especially needed at the time of scans. Some patients may also benefit from help with talking to their social networks. Head-to-head comparisons are needed of differing psychological interventions.https://doi.org/10.1186/s12885-025-14368-6Advanced cancerImmunotherapyTargeted treatmentsUncertaintyCopingQualitative
spellingShingle Tim Luckett
Carrie-Anne Ng
Julia Lai-Kwon
Damien Kee
Brendan Mulhern
Anthony M. Joshua
Uncertainty and hope in people with metastatic uveal melanoma in the era of immunotherapy and targeted treatments: a theory-based qualitative study
BMC Cancer
Advanced cancer
Immunotherapy
Targeted treatments
Uncertainty
Coping
Qualitative
title Uncertainty and hope in people with metastatic uveal melanoma in the era of immunotherapy and targeted treatments: a theory-based qualitative study
title_full Uncertainty and hope in people with metastatic uveal melanoma in the era of immunotherapy and targeted treatments: a theory-based qualitative study
title_fullStr Uncertainty and hope in people with metastatic uveal melanoma in the era of immunotherapy and targeted treatments: a theory-based qualitative study
title_full_unstemmed Uncertainty and hope in people with metastatic uveal melanoma in the era of immunotherapy and targeted treatments: a theory-based qualitative study
title_short Uncertainty and hope in people with metastatic uveal melanoma in the era of immunotherapy and targeted treatments: a theory-based qualitative study
title_sort uncertainty and hope in people with metastatic uveal melanoma in the era of immunotherapy and targeted treatments a theory based qualitative study
topic Advanced cancer
Immunotherapy
Targeted treatments
Uncertainty
Coping
Qualitative
url https://doi.org/10.1186/s12885-025-14368-6
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