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Living with and beyond metastatic non-small cell lung cancer: the survivorship experience for people treated with immunotherapy or targeted therapy

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Abstract

Purpose

Immunotherapy (IT) and targeted therapy (TT) have improved survival for some patients with metastatic non-small cell lung cancer (NSCLC). Their lived experience is under-studied. We conducted a single centre, qualitative study to understand concerns and unmet needs amongst this novel survivor population.

Methods

Eligible participants had metastatic NSCLC, aged >18, English-speaking and >6 months post initiation of IT/TT without progressive disease. Semi-structured interviews focused on physical, psychological, social and functional impacts of diagnosis, therapy and prognosis. Interviews were recorded and transcribed. Data were analysed via qualitative thematic analysis.

Results

Between May and December 2019, 20 participants were interviewed: median age 62 (range 34–83), 13 (65%) female; median time since diagnosis of metastatic NSCLC 27 months (range 10–108). Twelve out of 20 (60%) participants had a targetable mutation (EGFR/ALK/BRAF); 6 were receiving IT, 11 TT, 2 IT + chemotherapy and 1 IT + TT. Four main themes were identified: living long-term on IT and TT (chronic toxicities), psychological concerns (living with uncertainty, fear of cancer progression, scan-related anxiety), support with practical issues (finances, employment amidst prognostic uncertainty, challenges with trial participation) and wanting information pertinent to NSCLC subtype.

Conclusions

Longer-term survivors of metastatic NSCLC experience significant physical, psychological and functional concerns and unmet needs. Results will inform a broader cross-sectional survey and resources to address the needs of this growing survivor group.

Implications for Cancer Survivors

A ‘one-size-fits-all’ approach to NSCLC survivorship is no longer appropriate. Survivors of metastatic NSCLC treated with novel therapies may benefit from specific information regarding long-term toxicities and psychological supports.

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Acknowledgements

We would like to thank patients who participated in this study and the Lung Service, Peter MacCallum Cancer Centre for their support.

Funding

This work was funded by a research grant from the Lung Service, Peter MacCallum Cancer Centre.

Author information

Author notes

  1. JLK and SH are equal first authors. RK and MJ are equal senior authors.

Authors and Affiliations

  1. Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, Australia

    Julia Lai-Kwon, Sarah Heynemann, Linda Mileshkin, Benjamin Solomon & Michael Jefford

  2. Social and Global Studies Centre, RMIT University, Melbourne, Australia

    Jacinthe Flore & Renata Kokanovic

  3. Centre for Medical Psychology & Evidence-based Decision-making, School of Psychology, Faculty of Science, University of Sydney, Sydney, Australia

    Haryana Dhillon

  4. Psycho-oncology Cooperative Research Group, School of Psychology, Faculty of Science, University of Sydney, Sydney, Australia

    Haryana Dhillon

  5. Lung Service, Peter MacCallum Cancer Centre, Melbourne, Australia

    Mary Duffy, Linda Mileshkin, Benjamin Solomon & David Ball

  6. Patient Representative, Melbourne, Australia

    John Burke & Lisa Briggs

  7. Patient Representative, Sydney, Australia

    Lillian Leigh

  8. Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, Australia

    Linda Mileshkin, Benjamin Solomon & Michael Jefford

  9. Department of Radiation Oncology, Peter MacCallum Cancer Centre, Melbourne, Australia

    David Ball

  10. Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, Australia

    Michael Jefford

Authors
  1. Julia Lai-Kwon
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  2. Sarah Heynemann
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  3. Jacinthe Flore
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  4. Haryana Dhillon
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  5. Mary Duffy
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  6. John Burke
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  7. Lisa Briggs
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  8. Lillian Leigh
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  9. Linda Mileshkin
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  10. Benjamin Solomon
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  11. David Ball
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  12. Renata Kokanovic
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  13. Michael Jefford
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Corresponding author

Correspondence to Michael Jefford.

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The authors declare that they have no conflict of interest.

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Lai-Kwon, J., Heynemann, S., Flore, J. et al. Living with and beyond metastatic non-small cell lung cancer: the survivorship experience for people treated with immunotherapy or targeted therapy. J Cancer Surviv 15, 392–397 (2021). https://doi.org/10.1007/s11764-021-01024-8

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  • DOI: https://doi.org/10.1007/s11764-021-01024-8

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