Survivorship - Purpose and role of Survivorship Collaborative
It is estimated there are some 70,000 Western Australians currently living after a diagnosis of cancer (excluding minor skin cancers). For some, their cancer journey is a remote memory; for others, they are currently going through what may be intensive, complex and demanding multi-modality treatment. The optimum care of people after cancer and, where possible, full recovery and return to the complete spectrum of life - relationships, work, physical and mental good health, sexuality - has become internationally recognised as Survivorship.
The essence of Survivorship is to provide cancer survivors - cured or not - with a plan. This plan should incorporate details of each person's therapy, possible late and long term side effects, and risks of future illness, and then give ways of surveilling the original cancer, monitoring for other at-risk illness, rehabilitating, and providing healing towards the best achievable health. It should allocate clearly which health professional is going to do what, and it should provide a mechanism for prompt return to the oncology speciality unit or team if concerns of relapse or complications are raised.
Goal of Survivorship
Our goal is to promote the optimal recovery of Western Australians after a diagnosis of, and/or treatment for, cancer. This is to be achieved through improving clinical care, communication and education, and fostering research. Examples of such aims include identifying and agreeing upon appropriate tools and instruments for good survivorship, ensuring equality of access to good survivorship across age, geographical, cultural and linguistic barriers; promoting consumer awareness, dialogue across health stakeholders, greater involvement of the primary care sector and facilitating research and collaboration.
Although there are many goals and aspirations, the "key performance indicator", very simply, as seeing a rising number of Western Australians - and their health care providers - being provided with an accurate, clinically useful, Treatment Summary and Survivorship Care Plan. To achieve this across different patient groups, tumour types and institutions, necessarily involves a broad slice of health professionals. Harnessing and harmonising such commitment will be the wider measure of our Collaborative's success.
Why the LIFEBUOY as our logo?
WACPCN Survivorship Collaborative:
By Clinical Professor David Joske
Survivorship, it is widely agreed, first came into focus with the publication by Dr Fitzhugh Mullan, a paediatrician, of reflections upon his own cancer experience (New Engl J Med 1985; 313(4):270-273). He drew attention to the unique physical and psychological problems faced by people attempting to resume life after the diagnosis and treatment of cancer.
"Despite this success on the treatment front, we have done very little in a concerted and well-planned fashion to investigate and address the problems of survivors. It is as if we have invented sophisticated techniques to save people from drowning, but once they have been pulled from the water, we leave them on the dock to cough and splutter on their own in the belief that we have done all we can."
It is from this famous statement that the logo of the lifebuoy has been selected to represent this collaborative and our moves to optimise after-cancer care in WA. In a sense, he might well say that it is what we do after we use the lifebuoy that is important!
As of early September we have a number of achievements. Scoping has been done to assemble a list and raise awareness of current projects, which will facilitate cross-pollination of good practices and successes. These are included on the website here for just this purpose. Stand-outs thus far include the Breast Cancer unit at RPH (now FSH) which has embarked upon providing Survivorship Care Plans to selected cases of women with breast cancer. This in turn has been supported by a successful application for a WACPN One-Off grant to support "Development of an Evidence-Based Breast Cancer Follow Up Strategy" (Principal Investigator Dr Andy Redfern) and including a Survivorship Nurse Coordinator position. A randomised controlled clinical trial of a Haematology Nurse-Led Survivorship clinic is underway at SCGH, with support from University of Notre Dame, the Cancer Council of WA, SolarisCare and others (Principal Investigator/ PhD supervisor Professor Leanne Monterooso, Lead Clinician, this author). Princess Margaret Hospital is involved in a national study "Developing a Model of Care for Long Term Follow Up of Childhood Cancer Survivors" (Dr Thomas Walwyn). Dr Rachel Hughes of the WA Youth Cancer Service is involved in a national Adolescent and Young Adult cancers patterns of care study. Dr Redfern is studying outcomes of cancer in indigenous Australians, following on from an earlier NHMRC study. There are other projects, too numerous to mention here.
Priorities for Survivorship
Attendees at the first meeting were asked to identify the existing major shortfalls in survivorship care. The outstanding issue, raised across several levels of the health community, was to better deal with the large health issues affecting adult survivors of paediatric cancers. It is well established that these individuals have unique, complex and often foreseeable predispositions to chronic illness; examples include cardiomyopathies, endocrinological and bony pathologies and mental ill-health. An initiative was already underway through the WACPN to develop a new model of care - specifically a clinic, staffed by a physician with a unique skill set and a nurse coordinator, and located at SCGH (next to the new children's hospital) - and this has been prioritised as the collaboratives number one short term goal. Refinements to the submission and meetings with the North Metropolitan Area Health Service and other stakeholders have been held. Our hopes are high that this new, much-needed clinic will be able to start soon and provide expertise, resource and triaging for the unique health problems of this group of Western Australians.
Other issues raised include a central repository of survivorship projects, developing a risk stratification model in collaboration with the specific tumour site-specific collaboratives, defining models of care that dovetail with national survivorship models, promoting GP awareness and involvement in cancer survivorship, and surveying consumer preferences and perceptions.
Minutes from Survivorship meetings
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