Cancer survivorship refers to a person living with cancer, from the time of diagnosis and primary treatment to the longer-term effects of the cancer and treatment itself, through to end of life. Historically it was a term used from completion of active cancer treatment, but there is now a shift to provide survivorship care from the point of diagnosis to improve the patient experience and outcomes.
An ageing population, earlier detection and diagnosis, and improvements in cancer treatment have all resulted in greater survival rates and as a result the Australian healthcare system continues to treat a growing population of long-term cancer survivors.
Over one million Australians are now living with or beyond their cancer diagnosis. Two thirds of people surviving a cancer diagnosis report having ongoing unmet health care needs which conventional oncology services cannot fulfil. Cancer survivors require greater support in areas of healthcare that focus on their quality of life, their experience of the care process, functional outcomes, and the ongoing management of comorbid conditions.
Cancer can have a lasting impact including:
- Ongoing physical and emotional side effects from treatment that impact on wellness, including fatigue, changes in thinking and memory, and mood
- Fear of the cancer coming back or progressing
- Practical concerns around finances and return to work.
The Cancer Australia Principles of Cancer Survivorship provides a national framework to guide policy, planning and health system responses. These principles recommend that people affected by cancer receive holistic patient-centred care which is coordinated and integrated across treatment modalities, providers and health settings, including the public sector so that care is delivered in a logical, connected and timely manner for optimal continuity and to meet individual needs of the people affected by cancer.
The Australian Institute of Health and Welfare reported that there were more than 21,000 individuals living with gynaecological cancer in 2016. Aboriginal women are 1.7 times more likely than non-Aboriginal women to be diagnosed with gynaecological cancer and are particularly over-represented in cervical cancer.
Cancer modelling studies have predicted a 54% increase in the number of cancers in women and a decrease in mortality rates, which has meant an increasing number of survivors. More than half of all gynaecological cancer survivors experience long-term physical and psychological side effects from their diagnosis and treatment.
There currently is no comprehensive gynaecologic cancer survivorship clinic in Australia. The Western Australian Gynaecological Cancer Service (WAGCS) has identified a gap in the provision of coordinated service delivery and implemented the first such clinic in Australia in July this year.
Cervix and vulva cancer patients and select endometrial cancer patients will form the main group of survivors. These patients are mostly young, having had curative intent but multimodal treatment (surgery, radiation and chemotherapy) and have high unmet supportive care needs including those affecting bowel and bladder function, sexual health (loss of sexual function or dysfunction, sex and intimacy issues), surgical menopause, loss of fertility, chronic pain and lymphoedema.
Referrals will initially be from existing public patients, with the ultimate goal to have equity of access for all as the service grows.
The service will be led by a multidisciplinary team including gynae-oncologist Associate Professor Emma Allanson and Professor Paul Cohen, specialist nurse, physiotherapist, clinical psychologist, dietician, palliative care and liaison GP. The RACGP has just recently released a new college cancer survivorship shared care position statement in June that highlights the role of GPs in providing holistic and comprehensive care coordination.
The WAGCS survivorship clinic is a half-day weekly clinic. It commences with a multidisciplinary case conference of expected patients. The patients are informed that the first visit can takes at least three hours to see all clinicians required to meet their survivorship needs.
A survivorship care plan is prepared for patients (and their primary care provider) and routine oncology follow-up is incorporated into their survivorship visits. The development of individual survivorship plans for patients is based on Patient Reported Outcome and Experience Measures (PROMs/PREMs), which measure physical, social, emotional, sexual and functional wellbeing.
The ultimate goal is to establish collaborative partnerships between patients and health professionals including GPs to empower cancer survivors to self-manage their health and well-being.
Key messages
- Cancer patients have long lasting complex cancer survivorship needs
- Multidisciplinary tumour stream specific clinics are needed to address survivorship issues and the patient experience and outcomes
- Shared survivorship care with GPs plays an integral part.
Author competing interests – nil