Skip to main content
Top
Published in: BMC Health Services Research 1/2022

Open Access 01-12-2022 | Care | Research

A qualitative investigation of the supportive care experiences of people living with pancreatic and oesophagogastric cancer

Authors: Nadia N. Khan, Ashika Maharaj, Sue Evans, Charles Pilgrim, John Zalcberg, Wendy Brown, Paul Cashin, Daniel Croagh, Natasha Michael, Jeremy Shapiro, Kate White, Liane Ioannou

Published in: BMC Health Services Research | Issue 1/2022

Login to get access

Abstract

Background

Pancreatic and oesophagogastric (OG) cancers have a dismal prognosis and high symptom burden, with supportive care forming an integral component of the care provided to patients. This study aimed to explore the supportive care experiences of patients and caregivers living with pancreatic and OG cancers in order to identify perceived opportunities for improvement.

Methods

Semi-structured individual interviews were conducted with people living with pancreatic and OG cancers, and their caregivers, across Victoria, Australia during 2020. Interviews were thematically analysed to identify common themes.

Results

Forty-one participants were interviewed, including 30 patients and 11 caregivers. Three overarching themes, each with multiple sub-themes, were identified: (i) inadequate support for symptoms and issues across the cancer journey (ii) caregiver’s desire for greater support, and (iii) a multidisciplinary care team is the hallmark of a positive supportive care experience. Generally, those who had access to a cancer care coordinator and/or a palliative care team recounted more positive supportive care experiences.

Conclusion

Unmet needs are prevalent across the pancreatic and OG cancer journey, with supportive care provided to varying levels of satisfaction. Greater awareness of and access to high-quality multidisciplinary support services is greatly desired by both patients with pancreatic and OG cancer and their caregivers.
Appendix
Available only for authorised users
Literature
1.
go back to reference Australian Institute of Health and Welfare. Cancer in Australia 2019. Canberra: AIHW; 2019. Australian Institute of Health and Welfare. Cancer in Australia 2019. Canberra: AIHW; 2019.
2.
go back to reference Beesley VL, Janda M, Goldstein D, Gooden H, Merrett ND, O'Connell DL, et al. A tsunami of unmet needs: pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services. Psycho-oncology. 2016;25(2):150–7.CrossRef Beesley VL, Janda M, Goldstein D, Gooden H, Merrett ND, O'Connell DL, et al. A tsunami of unmet needs: pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services. Psycho-oncology. 2016;25(2):150–7.CrossRef
3.
go back to reference Bauer MR, Bright EE, MacDonald JJ, Cleary EH, Hines OJ, Stanton AL. Quality of life in patients with pancreatic cancer and their caregivers: a systematic review. Pancreas. 2018;47(4):368–75.CrossRef Bauer MR, Bright EE, MacDonald JJ, Cleary EH, Hines OJ, Stanton AL. Quality of life in patients with pancreatic cancer and their caregivers: a systematic review. Pancreas. 2018;47(4):368–75.CrossRef
4.
go back to reference Bouras G, Markar SR, Burns EM, Huddy JR, Bottle A, Athanasiou T, et al. The psychological impact of symptoms related to esophagogastric cancer resection presenting in primary care: a national linked database study. Eur J Surg Oncol. 2017;43(2):454–60.CrossRef Bouras G, Markar SR, Burns EM, Huddy JR, Bottle A, Athanasiou T, et al. The psychological impact of symptoms related to esophagogastric cancer resection presenting in primary care: a national linked database study. Eur J Surg Oncol. 2017;43(2):454–60.CrossRef
5.
go back to reference Hui D. Definition of supportive care: does the semantic matter? Curr Opin Oncol. 2014;26(4):372–9.CrossRef Hui D. Definition of supportive care: does the semantic matter? Curr Opin Oncol. 2014;26(4):372–9.CrossRef
6.
go back to reference Cancer Council Victoria and Department of Health Victoria, Optimal care pathway for people with pancreatic cancer, 2nd edn. Cancer Council Victoria: Melbourne; 2021. Cancer Council Victoria and Department of Health Victoria, Optimal care pathway for people with pancreatic cancer, 2nd edn. Cancer Council Victoria: Melbourne; 2021.
7.
go back to reference Victorian Department of Health and Human Services, Cancer Council Victoria. Optimal care pathway for people with oesophagogastric cancer. 2015. Victorian Department of Health and Human Services, Cancer Council Victoria. Optimal care pathway for people with oesophagogastric cancer. 2015.
8.
go back to reference Vanbutsele G, Pardon K, Van Belle S, Surmont V, De Laat M, Colman R, et al. Effect of early and systematic integration of palliative care in patients with advanced cancer: a randomised controlled trial. Lancet Oncol. 2018;19(3):394–404.CrossRef Vanbutsele G, Pardon K, Van Belle S, Surmont V, De Laat M, Colman R, et al. Effect of early and systematic integration of palliative care in patients with advanced cancer: a randomised controlled trial. Lancet Oncol. 2018;19(3):394–404.CrossRef
9.
go back to reference Basch E, Deal AM, Dueck AC, Scher HI, Kris MG, Hudis C, et al. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA. 2017;318(2):197–8.CrossRef Basch E, Deal AM, Dueck AC, Scher HI, Kris MG, Hudis C, et al. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA. 2017;318(2):197–8.CrossRef
10.
go back to reference Biegel DE. Family caregiving in chronic illness: Alzheimer's disease, cancer, heart disease, mental illness, and stroke / David E. Biegel, Esther Sales, Richard Schulz. Sales E, Schulz R, Mandel School of Applied Social S, editors. Newbury Park: Sage Publications; 1991. Biegel DE. Family caregiving in chronic illness: Alzheimer's disease, cancer, heart disease, mental illness, and stroke / David E. Biegel, Esther Sales, Richard Schulz. Sales E, Schulz R, Mandel School of Applied Social S, editors. Newbury Park: Sage Publications; 1991.
11.
go back to reference El-Jawahri A, Greer JA, Pirl WF, Park ER, Jackson VA, Back AL, et al. Effects of early integrated palliative care on caregivers of patients with lung and gastrointestinal cancer: a randomized clinical trial. Oncologist. 2017;22(12):1528–34.CrossRef El-Jawahri A, Greer JA, Pirl WF, Park ER, Jackson VA, Back AL, et al. Effects of early integrated palliative care on caregivers of patients with lung and gastrointestinal cancer: a randomized clinical trial. Oncologist. 2017;22(12):1528–34.CrossRef
12.
go back to reference Maharaj AD, Holland JF, Scarborough RO, Evans SM, Ioannou LJ, Brown W, et al. The upper gastrointestinal cancer registry (UGICR): a clinical quality registry to monitor and improve care in upper gastrointestinal cancers. BMJ Open. 2019;9(9):e031434.CrossRef Maharaj AD, Holland JF, Scarborough RO, Evans SM, Ioannou LJ, Brown W, et al. The upper gastrointestinal cancer registry (UGICR): a clinical quality registry to monitor and improve care in upper gastrointestinal cancers. BMJ Open. 2019;9(9):e031434.CrossRef
13.
go back to reference Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qualit Res Sport, Exercise Health. 2019;11(4):589–97.CrossRef Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qualit Res Sport, Exercise Health. 2019;11(4):589–97.CrossRef
14.
go back to reference Gergen KJ. The social constructionist movement in modern psychology. Am Psychol. 1985;40(3):266–75.CrossRef Gergen KJ. The social constructionist movement in modern psychology. Am Psychol. 1985;40(3):266–75.CrossRef
15.
go back to reference Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef
16.
go back to reference O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–51.CrossRef O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–51.CrossRef
17.
go back to reference Watson EK, Brett J, Hay H, Witwicki C, Perris A, Poots AJ, et al. Experiences and supportive care needs of UK patients with pancreatic cancer: a cross-sectional questionnaire survey. BMJ Open. 2019;9(11):e032681.CrossRef Watson EK, Brett J, Hay H, Witwicki C, Perris A, Poots AJ, et al. Experiences and supportive care needs of UK patients with pancreatic cancer: a cross-sectional questionnaire survey. BMJ Open. 2019;9(11):e032681.CrossRef
18.
go back to reference Gooden HM, White KJ. Pancreatic cancer and supportive care—pancreatic exocrine insufficiency negatively impacts on quality of life. Support Care Cancer. 2013;21(7):1835–41.CrossRef Gooden HM, White KJ. Pancreatic cancer and supportive care—pancreatic exocrine insufficiency negatively impacts on quality of life. Support Care Cancer. 2013;21(7):1835–41.CrossRef
19.
go back to reference Malmström M, Ivarsson B, Johansson J, Klefsgård R. Long-term experiences after oesophagectomy/gastrectomy for cancer--a focus group study. Int J Nurs Stud. 2013;50(1):44–52.CrossRef Malmström M, Ivarsson B, Johansson J, Klefsgård R. Long-term experiences after oesophagectomy/gastrectomy for cancer--a focus group study. Int J Nurs Stud. 2013;50(1):44–52.CrossRef
20.
go back to reference Koulouris AI, Banim P, Hart AR. Pain in patients with pancreatic cancer: prevalence, mechanisms, management and future developments. Dig Dis Sci. 2017;62(4):861–70.CrossRef Koulouris AI, Banim P, Hart AR. Pain in patients with pancreatic cancer: prevalence, mechanisms, management and future developments. Dig Dis Sci. 2017;62(4):861–70.CrossRef
21.
go back to reference Ceyhan GO, Bergmann F, Kadihasanoglu M, Altintas B, Demir IE, Hinz U, et al. Pancreatic neuropathy and neuropathic pain--a comprehensive pathomorphological study of 546 cases. Gastroenterology. 2009;136(1):177–86.e1.CrossRef Ceyhan GO, Bergmann F, Kadihasanoglu M, Altintas B, Demir IE, Hinz U, et al. Pancreatic neuropathy and neuropathic pain--a comprehensive pathomorphological study of 546 cases. Gastroenterology. 2009;136(1):177–86.e1.CrossRef
22.
go back to reference Steindorf K, Clauss D, Tjaden C, Hackert T, Herbolsheimer F, Bruckner T, et al. Quality of life, fatigue, and sleep problems in pancreatic cancer patients—a randomized trial on the effects of exercise. Dtsch Arztebl Int. 2019;116(27-28):471–8.PubMedPubMedCentral Steindorf K, Clauss D, Tjaden C, Hackert T, Herbolsheimer F, Bruckner T, et al. Quality of life, fatigue, and sleep problems in pancreatic cancer patients—a randomized trial on the effects of exercise. Dtsch Arztebl Int. 2019;116(27-28):471–8.PubMedPubMedCentral
23.
go back to reference Corbett TK, Groarke A, Devane D, Carr E, Walsh JC, McGuire BE. The effectiveness of psychological interventions for fatigue in cancer survivors: systematic review of randomised controlled trials. Syst Rev. 2019;8(1):324.CrossRef Corbett TK, Groarke A, Devane D, Carr E, Walsh JC, McGuire BE. The effectiveness of psychological interventions for fatigue in cancer survivors: systematic review of randomised controlled trials. Syst Rev. 2019;8(1):324.CrossRef
24.
go back to reference Zhang Y, Lin L, Li H, Hu Y, Tian L. Effects of acupuncture on cancer-related fatigue: a meta-analysis. Support Care Cancer. 2018;26(2):415–25.CrossRef Zhang Y, Lin L, Li H, Hu Y, Tian L. Effects of acupuncture on cancer-related fatigue: a meta-analysis. Support Care Cancer. 2018;26(2):415–25.CrossRef
25.
go back to reference Yennurajalingam S, Frisbee-Hume S, Palmer JL, Delgado-Guay MO, Bull J, Phan AT, et al. Reduction of cancer-related fatigue with dexamethasone: a double-blind, randomized, placebo-controlled trial in patients with advanced cancer. J Clin Oncol. 2013;31(25):3076–82.CrossRef Yennurajalingam S, Frisbee-Hume S, Palmer JL, Delgado-Guay MO, Bull J, Phan AT, et al. Reduction of cancer-related fatigue with dexamethasone: a double-blind, randomized, placebo-controlled trial in patients with advanced cancer. J Clin Oncol. 2013;31(25):3076–82.CrossRef
26.
go back to reference Enomoto LM, Fenstermaker J, Desnoyers RJ, Pasche BC, Blackstock AW Jr, Howerton RM, et al. Oncology navigation decreases time to treatment in patients with pancreatic malignancy. Ann Surg Oncol. 2019;26(5):1512–8.CrossRef Enomoto LM, Fenstermaker J, Desnoyers RJ, Pasche BC, Blackstock AW Jr, Howerton RM, et al. Oncology navigation decreases time to treatment in patients with pancreatic malignancy. Ann Surg Oncol. 2019;26(5):1512–8.CrossRef
27.
go back to reference Muñoz RDMSNNPCPHNO, Farshidpour LBS, Chaudhary UBMD, Fathi AHMD. Multidisciplinary cancer care model. Clin J Oncol Nurs. 2018;22(5):E141–E5.CrossRef Muñoz RDMSNNPCPHNO, Farshidpour LBS, Chaudhary UBMD, Fathi AHMD. Multidisciplinary cancer care model. Clin J Oncol Nurs. 2018;22(5):E141–E5.CrossRef
28.
go back to reference Drury VB, Inma C. Exploring patient experiences of cancer services in regional Australia. Cancer Nurs. 2010;33(1):E25–31.CrossRef Drury VB, Inma C. Exploring patient experiences of cancer services in regional Australia. Cancer Nurs. 2010;33(1):E25–31.CrossRef
29.
go back to reference Walling AM, Tisnado D, Ettner SL, Asch SM, Dy SM, Pantoja P, et al. Palliative care specialist consultation is associated with supportive care quality in advanced cancer. J Pain Symptom Manage. 2016;52(4):507–14.CrossRef Walling AM, Tisnado D, Ettner SL, Asch SM, Dy SM, Pantoja P, et al. Palliative care specialist consultation is associated with supportive care quality in advanced cancer. J Pain Symptom Manage. 2016;52(4):507–14.CrossRef
30.
go back to reference Thomas TH, Jackson VA, Carlson H, Rinaldi S, Sousa A, Hansen A, et al. Communication differences between oncologists and palliative care clinicians: a qualitative analysis of early, integrated palliative care in patients with advanced cancer. J Palliat Med. 2019;22(1):41–9.CrossRef Thomas TH, Jackson VA, Carlson H, Rinaldi S, Sousa A, Hansen A, et al. Communication differences between oncologists and palliative care clinicians: a qualitative analysis of early, integrated palliative care in patients with advanced cancer. J Palliat Med. 2019;22(1):41–9.CrossRef
31.
go back to reference Basch E, Deal AM, Kris MG, Scher HI, Hudis CA, Sabbatini P, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol. 2015;34(6):557–65.CrossRef Basch E, Deal AM, Kris MG, Scher HI, Hudis CA, Sabbatini P, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol. 2015;34(6):557–65.CrossRef
32.
go back to reference Mohammed S, Swami N, Pope A, Rodin G, Hannon B, Nissim R, et al. “I didn't want to be in charge and yet I was”: bereaved caregivers’ accounts of providing home care for family members with advanced cancer. Psycho-oncology. 2018;27(4):1229–36.CrossRef Mohammed S, Swami N, Pope A, Rodin G, Hannon B, Nissim R, et al. “I didn't want to be in charge and yet I was”: bereaved caregivers’ accounts of providing home care for family members with advanced cancer. Psycho-oncology. 2018;27(4):1229–36.CrossRef
33.
go back to reference Verschuur EM, Steyerberg EW, Kuipers EJ, Essink-Bot ML, Tran KT, Van Der Gaast A, et al. Experiences and expectations of patients after oesophageal cancer surgery: an explorative study. Eur J Cancer Care. 2006;15(4):324–32.CrossRef Verschuur EM, Steyerberg EW, Kuipers EJ, Essink-Bot ML, Tran KT, Van Der Gaast A, et al. Experiences and expectations of patients after oesophageal cancer surgery: an explorative study. Eur J Cancer Care. 2006;15(4):324–32.CrossRef
34.
go back to reference Sklenarova H, Krümpelmann A, Haun MW, Friederich HC, Huber J, Thomas M, et al. When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer. 2015;121(9):1513–9.CrossRef Sklenarova H, Krümpelmann A, Haun MW, Friederich HC, Huber J, Thomas M, et al. When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer. 2015;121(9):1513–9.CrossRef
35.
go back to reference Minaya P, Baumstarck K, Berbis J, Goncalves A, Barlesi F, Michel G, et al. The CareGiver Oncology Quality of Life questionnaire (CarGOQoL): development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer. Eur J Cancer (Oxford, England: 1990). 2012;48(6):904–11.CrossRef Minaya P, Baumstarck K, Berbis J, Goncalves A, Barlesi F, Michel G, et al. The CareGiver Oncology Quality of Life questionnaire (CarGOQoL): development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer. Eur J Cancer (Oxford, England: 1990). 2012;48(6):904–11.CrossRef
37.
go back to reference de Joode K, Dumoulin DW, Engelen V, Bloemendal HJ, Verheij M, van Laarhoven HWM, et al. Impact of the coronavirus disease 2019 pandemic on cancer treatment: the patients’ perspective. Eur J Cancer (Oxford, England: 1990). 2020;136:132–9.CrossRef de Joode K, Dumoulin DW, Engelen V, Bloemendal HJ, Verheij M, van Laarhoven HWM, et al. Impact of the coronavirus disease 2019 pandemic on cancer treatment: the patients’ perspective. Eur J Cancer (Oxford, England: 1990). 2020;136:132–9.CrossRef
38.
go back to reference Amaddeo G, Brustia R, Allaire M, Lequoy M, Hollande C, Regnault H, et al. Impact of COVID-19 on the management of hepatocellular carcinoma in a high-prevalence area. JHEP Rep: Innov Hepatol. 2021;3(1):100199.CrossRef Amaddeo G, Brustia R, Allaire M, Lequoy M, Hollande C, Regnault H, et al. Impact of COVID-19 on the management of hepatocellular carcinoma in a high-prevalence area. JHEP Rep: Innov Hepatol. 2021;3(1):100199.CrossRef
Metadata
Title
A qualitative investigation of the supportive care experiences of people living with pancreatic and oesophagogastric cancer
Authors
Nadia N. Khan
Ashika Maharaj
Sue Evans
Charles Pilgrim
John Zalcberg
Wendy Brown
Paul Cashin
Daniel Croagh
Natasha Michael
Jeremy Shapiro
Kate White
Liane Ioannou
Publication date
01-12-2022
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2022
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-022-07625-y

Other articles of this Issue 1/2022

BMC Health Services Research 1/2022 Go to the issue