Survivorship working group updates – May 2021
We would like to thank our many members who are contributing their time and expertise to help us advance several key survivorship projects:
Following the success of a session on Financial Toxicity at the 2020 COSA ASM, we have formed a working group to address financial toxicity in Australia (Chaired by Prof Ray Chan). This working group's focus is to define financial toxicity, scope current activities and services through an online survey, and develop a care pathway to guide the delivery of consistent, safe and evidence-based care for preventing and minimising financial toxicity in people living with cancer in Australia. We look forward to engaging with you further as these projects develop, but in the meantime please read these recent papers that some of our members have contributed to, which help highlight the importance of this initiative:
- Australian experiences of out-of-pocket costs and financial burden following a cancer diagnosis: a systematic review
- Cancer patients’ perspectives on financial burden in a universal healthcare system: Analysis of qualitative data from participants from 20 provincial cancer centers in Canada
- Screening for financial toxicity in clinical care with finance-related outcome measures
- Understanding the strategies rural cancer patients and survivors use to manage financial toxicity and the broader implications on their lives
The Patient Reported Outcomes (PRO) Working Group (Chaired by Prof Bogda Koczwara) continues to make excellent progress and has published its value proposition in the Medical Journal of Australia - Patient-reported outcomes and personalised cancer care. This paper provides the foundation for an advocacy approach and outlines the principles of clinical use of PROs in cancer care: core data; communication framework; access; standards of care; and patient involvement. The working group is now considering a collaborative project focused on mapping national PRO activity. This working group also provide additional mentorship to COSA Survivorship Research Fellow Dr Carolyn Mazariego, who is conducting a Delphi Study regarding minimum standards to implement PROs in routine care.
We have established a working group focused on supporting the role of primary care in cancer survivorship (Chaired by Prof Michael Jefford). This initiative is consistent with the COSA Model of Survivorship Care and we are now working with representatives from peak GP groups to consider COSA and the Survivorship Group’s role. COSA also took part in the recent Cancer Australia Ministerial Roundtable to develop the Australian Cancer Plan, which will inform our future directions in this area. Several members of the working group published a paper in the Australian Journal of General Practice (AJGP) during 2020 outlining ‘The important role of general practice in the care of cancer survivors’.
COSA Model of Survivorship Care
Over the past few years, a multi-disciplinary Working Group has been developing a document outlining the critical components of cancer survivorship care in Australia, including a model for cancer wellness. The project attempted to capture the elements of patient-centred care in a mixed healthcare system and to move the emphasis from an illness to wellness model of care.
Extensive consultation has occurred via:
- COSA members and relevant stakeholders, September 2014 (pdf)
- COSA ASM Survivorship Workshop, December 2014 (pdf)
- Flinders Cancer Survivorship Conference, February 2015
- Oncology Social Workers of Australia Annual Scientific Meeting, September 2015
- Cancer Consumer Consultation Workshop, November 2015 (pdf)
- COSA members and relevant medical groups, October 2016
The model was revised by the Working Group based on feedback received during these consultations, and the final version is available on the Survivorship Group Resources page.
The COSA Model of Survivorship Care is being widely promoted and the issues around implementation of the Model in Australia will be examined as a part of the future work of the COSA Survivorship Group, particularly by the Implementation of Survivorship Care Working Group.
