After the recent Survivorship 2015 Conference (6-8 February) in Adelaide, a group of consumers who had attended distilled their thoughts while the conference energy and memory were fresh.
This summary, facilitated by Cancer Voices, is based on survivors’ perspectives. It references our earlier contributions to the Flinders Charter of Survivorship (2013), an important element in the mix, as well as the developing COSA Survivorship Model. Ideally we ask for a single agreed framework which has had input from all stakeholders, including the end beneficiaries.
What do we want?
Australian cancer survivors are calling for a high level framework offering best practice recommendations for survivorship for people diagnosed with cancer.
There are almost one million (AIHW) cancer survivors who will benefit from a clear framework. This number will increase greatly with our aging population and continuing improvements in diagnosis and treatment.
We use a definition accepted by COSA and others “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition. Adapted from the National Coalition for Cancer Survivorship http://cancercontrol.cancer.gov/ocs/statistics/definitions.html,.
A framework about evidence based best practice survivorship for people diagnosed with cancer and their carers should address what to expect and how to navigate the post diagnosis cancer journey and beyond. Such a framework would also guide health professionals, including cancer specialists and allied health providers in service provision and delivery. This concept is the basis for accreditation of cancer centres in some other western countries and a similar guide is urgently needed here in Australia.
At the same time, we need better data about survivorship, with measures adopted in Australia that enable national and international comparisons of survivorship outcomes. Survivorship monitoring should review disparities in care, access to care and outcomes across all groups by age, gender, socioeconomic status, cultural, regional/rural, cancer type and stage, public/private sectors etc.
Cancer consumers recognise that:
- survivorship begins as first diagnosis and is ongoing
- best practice service delivery must address both physical and psychosocial needs
- best practice requires coordination of services and communication between professionals involved in care and monitoring
We recommend that a framework be developed with cancer consumer/survivor input to address:
- surveillance for recurrence of the primary cancer and metastases
- recording and reviews of diagnostic details (eg stage, progression, recurrence), treatment summary and care plan for follow-up
- empowering survivors to self-manage and advocate for their own health needs
- monitoring and managing treatment and psychosocial side effects (immediate and late)
- providing follow-up recommendations for detection of second cancers
- providing information about survivorship issues, physical, practical and psychosocial and how to find it
- management of the presence and/or development of comorbidities which impact on outcomes.
- promoting wellness and well-being, not just a focus on illness, including healthy lifestyle strategies, information & support
- communication with GPs and coordination of “shared care” between community care, hospital care and charity and volunteer organisations
- rehabilitation around physical, practical (eg ”financial toxicity”, return to work) and psychological impacts of cancer, and its treatment