Skye T Dong1,2,3, Phyllis N Butow4,5,6, Allison Tong7,8, Meera Agar9,10,11, Frances Boyle12,13, Benjamin C Forster9,12, Martin Stockler6,13,14, Melanie R Lovell9,13. 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.
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.
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 cancerpatients' 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 cancerpatients (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 cancerpatients and reduce their struggles with self-management burden, hopelessness, isolation, fear of abandonment and mortality anxieties.
Authors: Vithusha Ganesh; Liying Zhang; Stephanie Chan; Bo Angela Wan; Leah Drost; May Tsao; Cyril Danjoux; Elizabeth Barnes; Rachel McDonald; Leigha Rowbottom; Pearl Zaki; Ronald Chow; Matthew K Hwang; Carlo DeAngelis; Nicholas Lao; Edward Chow Journal: Support Care Cancer Date: 2017-05-23 Impact factor: 3.603
Authors: Mariëtte N Verkissen; Aline De Vleminck; Mogens Groenvold; Lea J Jabbarian; Francesco Bulli; Wilfried Cools; Johannes J M van Delden; Urška Lunder; Guido Miccinesi; Sheila A Payne; Kristian Pollock; Judith A C Rietjens; Luc Deliens Journal: Support Care Cancer Date: 2021-03-19 Impact factor: 3.603
Authors: Teresa L Hagan; Stephanie Gilbertson-White; Susan M Cohen; Jennifer S Temel; Joseph A Greer; Heidi S Donovan Journal: Clin J Oncol Nurs Date: 2018-02-01 Impact factor: 1.027
Authors: Sarah Ellen Braun; Farah J Aslanzadeh; Autumn Lanoye; Stephanie Fountain-Zaragoza; Mark G Malkin; Ashlee R Loughan Journal: J Neurooncol Date: 2021-09-07 Impact factor: 4.130
Authors: Ryan D Nipp; Areej El-Jawahri; Sara M D'Arpino; Andy Chan; Charn-Xin Fuh; P Connor Johnson; Daniel E Lage; Risa L Wong; William F Pirl; Lara Traeger; Barbara J Cashavelly; Vicki A Jackson; David P Ryan; Ephraim P Hochberg; Jennifer S Temel; Joseph A Greer Journal: Cancer Date: 2018-06-15 Impact factor: 6.860
Authors: Jennifer Jones; Jaimin Bhatt; Jonathan Avery; Andreas Laupacis; Katherine Cowan; Naveen Basappa; Joan Basiuk; Christina Canil; Sohaib Al-Asaaed; Daniel Heng; Lori Wood; Dawn Stacey; Christian Kollmannsberger; Michael A S Jewett Journal: Can Urol Assoc J Date: 2017-11-01 Impact factor: 1.862
Authors: John A Woods; Claire E Johnson; Hanh T Ngo; Judith M Katzenellenbogen; Kevin Murray; Sandra C Thompson Journal: Int J Environ Res Public Health Date: 2020-04-30 Impact factor: 3.390