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Patients’ experiences and perspectives of multiple concurrent symptoms in advanced cancer: a semi-structured interview study

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Abstract

Purpose

Patients with advanced cancer typically experience multiple concurrent symptoms, which have a detrimental impact on patient outcomes. No studies to date have qualitatively explored advanced cancer patients’ perceptions of multiple symptoms in oncology and palliative care settings. Understanding the experience of multiple symptoms can inform integrated clinical pathways for treating, assessing and reducing symptom burden. This study aims to describe the beliefs, attitudes and experiences of patients with multiple symptoms in advanced cancer.

Methods

Semi-structured interviews were conducted with 58 advanced cancer patients (23 inpatients and 35 outpatients), recruited purposively from two palliative care centres and two hospital-based oncology departments in Sydney, Australia. Transcripts were analysed thematically.

Results

Six major themes were identified: imminence of death and deterioration (impending death, anticipatory fear); overwhelming loss of control (symptom volatility, debilitating exhaustion, demoralisation, isolation); impinging on autonomy and identity (losing independence, refusal to a diminished self, self-advocacy, reluctance to burden others); psychological adaptation (accepting the impossibility of recovery, seeking distractions, maintaining hope, mindfulness, accommodating self-limitations), burden of self-management responsibility (perpetual self-monitoring, ambiguity in self-report, urgency of decision making, optimising management); and valuing security and empowerment (safety in coordinated care, compassionate care, fear of medical abandonment, dependence on social support). Patients transitioning from oncology to palliative care settings were more vulnerable to self-management burden.

Conclusion

Multiple symptoms have a profound impact on patients’ autonomy, function and psychological state. Multiple symptom management and integrated care is needed to empower advanced cancer patients and reduce their struggles with self-management burden, hopelessness, isolation, fear of abandonment and mortality anxieties.

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Acknowledgments

We would like to thank the following people for their generosity in assisting with recruitment: A/Prof. Phillip Beale, A/Prof. Josephine Clayton, Dr. Megan Best, Dr. Belinda Kiely and Dr. Prunella Blinman. We would like to deeply thank the patients who participated in the study.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Conflict of interest

The authors declare that they have no competing interests.

Author information

Authors and Affiliations

  1. School of Psychology, The University of Sydney, Sydney, Australia

    Skye T. Dong & Phyllis N. Butow

  2. Psycho-Oncology Co-operative Research Group (PoCoG), University of Sydney, Sydney, Australia

    Skye T. Dong & Phyllis N. Butow

  3. Centre for Medical Psychology and Evidence-based Decision Making (CeMPED), School of Psychology, University of Sydney, Sydney, Australia

    Skye T. Dong, Phyllis N. Butow & Martin Stockler

  4. Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia

    Allison Tong

  5. Sydney School of Public Health, The University of Sydney, Sydney, Australia

    Allison Tong

  6. Department of Palliative Care, Braeside Hospital and Greenwich Hospital, Hammond Care Palliative and Supportive Care Service, Sydney, NSW, Australia

    Meera Agar, Benjamin C. Forster & Melanie R. Lovell

  7. South West Sydney Clinical School, University of New South Wales, Sydney, Australia

    Meera Agar

  8. Discipline of Palliative and Supportive Services, Flinders University, Bedford Park, Australia

    Meera Agar

  9. Department of Oncology, The Mater Hospital North Sydney, Sydney, Australia

    Frances Boyle & Benjamin C. Forster

  10. The University of Sydney Medical School, Sydney, Australia

    Frances Boyle, Martin Stockler & Melanie R. Lovell

  11. Concord Cancer Centre Department of Oncology, Concord Repatriation General Hospital, Concord, Australia

    Martin Stockler

Authors
  1. Skye T. Dong
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  2. Phyllis N. Butow
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  3. Allison Tong
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  4. Meera Agar
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  5. Frances Boyle
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  6. Benjamin C. Forster
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  8. Melanie R. Lovell
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Corresponding author

Correspondence to Skye T. Dong.

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Dong, S.T., Butow, P.N., Tong, A. et al. Patients’ experiences and perspectives of multiple concurrent symptoms in advanced cancer: a semi-structured interview study. Support Care Cancer 24, 1373–1386 (2016). https://doi.org/10.1007/s00520-015-2913-4

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  • DOI: https://doi.org/10.1007/s00520-015-2913-4

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