Hostname: page-component-78c5997874-94fs2 Total loading time: 0 Render date: 2024-11-19T18:28:42.257Z Has data issue: false hasContentIssue false
  • English
  • Français

Association between pancreatic cancer patients' perception of their care coordination and patient-reported and survival outcomes

Published online by Cambridge University Press:  03 July 2017

Vanessa L. Beesley ,
Monika Janda ,
Elizabeth A. Burmeister ,
David Goldstein ,
Helen Gooden ,
Neil D. Merrett ,
Dianne L. O'Connell ,
David K. Wyld ,
Raymond J. Chan  and
Jane M. Young
...Show all authors
Vanessa L. Beesley*
Affiliation:
Population Health Department, QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia
Monika Janda
Affiliation:
School of Public Health and Social Work, Queensland University of Technology, Brisbane, Queensland, Australia
Elizabeth A. Burmeister
Affiliation:
Population Health Department, QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia
David Goldstein
Affiliation:
Department of Medical Oncology, Prince of Wales Hospital, Sydney, New South Wales, Australia Faculty of Medicine, University of New South Wales, Sydney, New South Wales, Australia
Helen Gooden
Affiliation:
Cancer Nursing Research Unit, University of Sydney, New South Wales, Sydney, Australia
Neil D. Merrett
Affiliation:
Discipline of Surgery, Western Sydney University, Sydney, New South Wales, Australia South Western Sydney Upper GI Surgical Unit, Bankstown Hospital, Sydney, New South Wales, Australia
Dianne L. O'Connell
Affiliation:
Cancer Research Division, Cancer Council of New South Wales, Sydney, New South Wales, Australia School of Public Health, University of Sydney, Sydney, New South Wales, Australia
David K. Wyld
Affiliation:
Department of Medical Oncology and Cancer Care Services, Royal Brisbane and Women's Hospital, Brisbane, Queensland, Australia School of Medicine, University of Queensland, Brisbane, Queensland, Australia
Raymond J. Chan
Affiliation:
Department of Medical Oncology and Cancer Care Services, Royal Brisbane and Women's Hospital, Brisbane, Queensland, Australia School of Nursing and Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, Queensland, Australia
Jane M. Young
Affiliation:
RPA Institute of Academic Surgery and Surgical Outcomes Research Centre, Sydney Local Health District, Sydney, New South Wales, Australia School of Public Health, University of Sydney, Sydney, New South Wales, Australia
Rachel E. Neale
Affiliation:
Population Health Department, QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia
*
Address correspondence and reprint requests to: Vanessa L Beesley, QIMR Berghofer Medical Research Institute, Population Health Department, Locked Bag 2000, Royal Brisbane Hospital, Queensland 4029, Australia. E-mail: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

People with pancreatic cancer have poor survival, and management is challenging. Pancreatic cancer patients' perceptions of their care coordination and its association with their outcomes have not been well-studied. Our objective was to determine if perception of care coordination is associated with patient-reported outcomes or survival.

Methods:

People with pancreatic cancer who were 1–8 months postdiagnosis (52 with completed resection and 58 with no resection) completed a patient-reported questionnaire that assessed their perceptions of care coordination, quality of life, anxiety, and depression using validated instruments. Mean scores for 15 care-coordination items were calculated and then ranked from highest (best experience) to lowest (worst experience). Associations between care-coordination scores (including communication and navigation domains) and patient-reported outcomes and survival were investigated using general linear regression and Cox regression, respectively. All analyses were stratified by whether or not the tumor had been resected.

Results:

In both groups, the highest-ranked care-coordination items were: knowing who was responsible for coordinating care, health professionals being informed about their history, and waiting times. The worst-ranked items related to: how often patients were asked about visits with other health professionals and how well they and their family were coping, knowing the symptoms they should monitor, having sufficient emotional help from staff, and access to additional specialist services. For people who had a resection, better communication and navigation scores were significantly associated with higher quality of life and less anxiety and depression. However, these associations were not statistically significant for those with no resection. Perception of cancer care coordination was not associated with survival in either group.

Significance of results:

Our results suggest that, while many core clinical aspects of care are perceived to be done well for pancreatic cancer patients, improvements in emotional support, referral to specialist services, and self-management education may improve patient-reported outcomes.

Keywords

Pancreatic cancerCare coordinationQuality of lifeAnxietyDepression
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 5 , October 2018 , pp. 534 - 543
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Ayanian, J.Z., Zaslavsky, A.M., Guadagnoli, E., et al. (2005). Patients' perceptions of quality of care for colorectal cancer by race, ethnicity, and language. Journal of Clinical Oncology, 23(27), 6576–6586.Google Scholar
Borras, J.M., Albrecht, T., Audisio, R., et al. (2014). Policy statement on multidisciplinary cancer care. European Journal of Cancer, 50(3), 475–480.Google Scholar
Buanes, T.A. (2014). Pancreatic cancer-improved care achievable. World Journal of Gastroenterology, 20(30), 10405–10418.Google Scholar
Burmeister, E., O'Connell, D.L., Beesley, V.L., et al. (2015). Describing patterns of care in pancreatic cancer: A population-based study. Pancreas, 44(8), 1259–1265.Google Scholar
Burmeister, E., O'Connell, D.L., Jordan, S.J., et al. (2016 a). Factors associated with quality of care for patients with pancreatic cancer. The Medical Journal of Australia, 205(10), 459–465.Google Scholar
Burmeister, E.A., Waterhouse, M., Jordan, S.J., et al. (2016 b). Determinants of survival and attempted resection in patients with non-metastatic pancreatic cancer: An Australian population-based study. Pancreatology, 16(5), 873–881.Google Scholar
Burmeister, E.A., Jordan, S.J., O'Connell, D.L., et al. (2016 c). Using a Delphi process to determine optimal care for patients with pancreatic cancer. Asia-Pacific Journal of Clinical Oncology, 12(2), 105–114.Google Scholar
Cella, D., Butt, Z., Kindler, H.L., et al. (2013). Validity of the FACT–Hepatobiliary (FACT–Hep) questionnaire for assessing disease-related symptoms and health-related quality of life in patients with metastatic pancreatic cancer. Quality of Life Research, 22(5), 1105–1112.Google Scholar
Clinical Oncology Society of Australia Model of Survivorship Care Working Group (2016). Model of Survivorship Care: Critical Components of Cancer Survivorship Care in Australia Position Statement, Version 1.0. Sydney: Clinical Oncology Society of Australia. Available from https:// www.cosa.org.au/media/332340/cosa-model-of-survivorship-care-full-version-final-20161107.pdf.Google Scholar
Department of Health and Aged Care & National Key Centre for Social Applications of Geographic Information Systems (2001). Measuring remoteness: Accessibility/Remoteness Index of Australia (ARIA), rev. ed. Occasional Papers: New Series no. 14. Canberra: Department of Health and Aged Care. Available from https://www.health.gov.au/internet/main/publishing.nsf/Content/E2EE19FE831F26BFCA257BF0001F3DFA/$File/ocpanew14.pdf.Google Scholar
Durcinoska, I., Young, J.M. & Solomon, M.J. (2017). Patterns and predictors of colorectal cancer care coordination: A population-based survey of Australian patients. Cancer, 123(2), 319–326.Google Scholar
Gandy, R.C., Barbour, A.P., Samra, J., et al. (2016). Refining the care of patients with pancreatic cancer: The AGITG Pancreatic Cancer Workshop consensus. The Medical Journal of Australia, 204(11), 419–422.Google Scholar
Hawley, S.T., Janz, N.K., Lillie, S.E., et al. (2010). Perceptions of care coordination in a population-based sample of diverse breast cancer patients. Patient Education and Counseling, 81(Suppl. 1), S34–S40.Google Scholar
Institute of Medicine (2013). Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: Institute of Medicine. Available from http://nationalacademies.org/hmd/~/media/Files/Report%20Files/2013/Quality-Cancer-Care/qualitycancercare_rb.pdf.Google Scholar
International Agency for Research on Cancer and World Health Organization (2012). GLOBOCAN 2012: Estimated Cancer Incidence, Mortality and Prevalence Worldwide in 2012. Geneva: World Health Organization. Available from http://globocan.iarc.fr/Default.aspx.Google Scholar
Jackson, G.L., Zullig, L.L., Phelan, S.M., et al. (2015). Patient characteristics associated with the level of patient-reported care coordination among male patients with colorectal cancer in the Veterans Affairs health care system. Cancer, 121(13), 2207–2213.Google Scholar
Janda, M., Neale, R.E., Klein, K., et al. (2017, under review). Anxiety, depression and quality of life in patients with pancreatic cancer and their carers. Pancreatology.Google Scholar
Schmier, J., Elixhauser, A. & Halpern, M.T. (1999). Health-related quality of life evaluations of gastric and pancreatic cancer. Hepatogastroenterology, 46(27), 1998–2004.Google Scholar
Sloan, J.A., Cella, D. & Hays, R.D. (2005). Clinical significance of patient-reported questionnaire data: Another step toward consensus. Journal of Clinical Epidemiology, 58(12), 1217–1219.Google Scholar
Torgerson, S. & Wiebe, L.A. (2013). Supportive care of the patient with advanced pancreatic cancer. Oncology (Williston Park, N.Y.), 27(3), 183–190.Google Scholar
Tran, B., Whiteman, D.C., Webb, P.M., et al. (2013). Association between ultraviolet radiation, skin sun sensitivity and risk of pancreatic cancer. Cancer Epidemiology, 37(6), 886–892.Google Scholar
Young, J.M., Walsh, J., Butow, P.N., et al. (2011). Measuring cancer care coordination: Development and validation of a questionnaire for patients. BMC Cancer, 11, 298.Google Scholar
Zigmond, A.S. & Snaith, R.P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67(6), 361–370.Google Scholar