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

Skye T Dong^{1

2

3}, Phyllis N Butow^{4

5

6}, Allison Tong^{7

8}, Meera Agar^{9

10

11}, Frances Boyle^{12

13}, Benjamin C Forster^{9

12}, Martin Stockler^{6

13

14}, Melanie R Lovell^{9

13}

Affiliations

¹ School of Psychology, The University of Sydney, Sydney, Australia. skye.dong@sydney.edu.au.
² Psycho-Oncology Co-operative Research Group (PoCoG), University of Sydney, Sydney, Australia. skye.dong@sydney.edu.au.
³ Centre for Medical Psychology and Evidence-based Decision Making (CeMPED), School of Psychology, University of Sydney, Sydney, Australia. skye.dong@sydney.edu.au.
⁴ School of Psychology, The University of Sydney, Sydney, Australia.
⁵ Psycho-Oncology Co-operative Research Group (PoCoG), University of Sydney, Sydney, Australia.
⁶ Centre for Medical Psychology and Evidence-based Decision Making (CeMPED), School of Psychology, University of Sydney, Sydney, Australia.
⁷ Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
⁸ Sydney School of Public Health, The University of Sydney, Sydney, Australia.
⁹ Department of Palliative Care, Braeside Hospital and Greenwich Hospital, Hammond Care Palliative and Supportive Care Service, Sydney, NSW, Australia.
¹⁰ South West Sydney Clinical School, University of New South Wales, Sydney, Australia.
¹¹ Discipline of Palliative and Supportive Services, Flinders University, Bedford Park, Australia.
¹² Department of Oncology, The Mater Hospital North Sydney, Sydney, Australia.
¹³ The University of Sydney Medical School, Sydney, Australia.
¹⁴ Concord Cancer Centre Department of Oncology, Concord Repatriation General Hospital, Concord, Australia.

PMID: 26341520
DOI: 10.1007/s00520-015-2913-4

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

Skye T Dong et al. Support Care Cancer. 2016 Mar.

. 2016 Mar;24(3):1373-86.

doi: 10.1007/s00520-015-2913-4. Epub 2015 Sep 4.

Authors

Affiliations

¹ School of Psychology, The University of Sydney, Sydney, Australia. skye.dong@sydney.edu.au.
² Psycho-Oncology Co-operative Research Group (PoCoG), University of Sydney, Sydney, Australia. skye.dong@sydney.edu.au.
³ Centre for Medical Psychology and Evidence-based Decision Making (CeMPED), School of Psychology, University of Sydney, Sydney, Australia. skye.dong@sydney.edu.au.
⁴ School of Psychology, The University of Sydney, Sydney, Australia.
⁵ Psycho-Oncology Co-operative Research Group (PoCoG), University of Sydney, Sydney, Australia.
⁶ Centre for Medical Psychology and Evidence-based Decision Making (CeMPED), School of Psychology, University of Sydney, Sydney, Australia.
⁷ Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
⁸ Sydney School of Public Health, The University of Sydney, Sydney, Australia.
⁹ Department of Palliative Care, Braeside Hospital and Greenwich Hospital, Hammond Care Palliative and Supportive Care Service, Sydney, NSW, Australia.
¹⁰ South West Sydney Clinical School, University of New South Wales, Sydney, Australia.
¹¹ Discipline of Palliative and Supportive Services, Flinders University, Bedford Park, Australia.
¹² Department of Oncology, The Mater Hospital North Sydney, Sydney, Australia.
¹³ The University of Sydney Medical School, Sydney, Australia.
¹⁴ Concord Cancer Centre Department of Oncology, Concord Repatriation General Hospital, Concord, Australia.

PMID: 26341520
DOI: 10.1007/s00520-015-2913-4

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.

Keywords: Advanced cancer; Cancer experience; Palliative care; Symptom cluster; Symptom management.

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

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

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