Current access to adolescent and young adult cancer services
In 2005, a Federal Government senate committee inquiry recommended the development of specialised cancer care units for the care of adolescents 15 to 25 years of age with cancer.56 In 2008, the Federal Government awarded $15 million funding to CanTeen to establish the Youth Cancer Networks Program in each state of Australia.40,57,58 The government has subsequently given $18.2 million for phase 2 in 2013, and additional funding has been confirmed in 2017 for phase 3.58
CanTeen is a charity, which started in 1985 providing practical support, counselling and peer-support programs to AYAs with cancer, their siblings or AYAs who are dealing with the death of a parent or sibling. CanTeen has developed Youth Cancer Services nationally through collaborations between paediatric and adult hospitals which work closely together to deliver inpatient and outpatient care. They also provide support to patients and staff in cancer centres outside these specialised centres. Each state and territory has a Youth Cancer Service (or a service overseen by a Youth Cancer Service) and about 19 hospitals are involved nationally. These services (see www.canteen.org.au/youth-cancer) are staffed by health professionals who have expertise in medical and nursing care and support for AYAs, usually appointed between paediatric and adult services to reach patients across the AYA age range. Through these centres, AYA patients can access a full range of services developed for that age group from cancer care, counselling, allied health services, fertility preservation, clinical trials and educational and vocational support. The Youth Cancer Services in NSW, Melbourne and Perth also have ‘You Can’ cancer centres specifically designed for the AYA age group and funded by the Sony Foundation (www.sonyfoundation.org/about/you-can), with plans over time for the other states and territories to also have these centres.
The Youth Cancer Services have a national, evidenced-based model of care which is underpinned by the National Service Delivery Framework for AYAs with Cancer, created in 2007 through collaboration between Cancer Australia and CanTeen,59 and updated in 2016. The Framework outlines key elements for the care of AYAs with cancer, including the establishment of lead AYA cancer care sites, healthcare professionals with adolescent general and subspecialty expertise improving access to clinical trials, co-ordinated care, psychosocial support services, support for AYA decision-making and expert multidisciplinary care teams trained in cancer care for AYAs.
Role of the GP
GPs have an essential role in the medical and psychosocial care of AYA patients with cancer, and cancer specialists should encourage this relationship, even for patients with complex problems. Many GPs will already have a relationship with the young person or their parents and siblings. They will be able to provide key information about the patient’s clinical or family history that may be critical to their medical care, and may also provide vital insight into the best way to support them. An AYA patient who does not have a GP should be encouraged to choose one as soon as they can, and the GP should be included in the patient’s care in a shared-care model with clear written communication.60
Clinical and support needs for AYA patients during and after treatment for cancer can be complex, and there is a wide range of services in the community to which GPs can refer patients, such as Headspace for concerns relating to mental health.
GPs can provide ongoing management of chronic and complex disease as well as regular adolescent health services and interventions; they can co-ordinate acute treatment or additional consultations when required; and they can refer patients, siblings and parents for psychosocial and practical support. If a patient cannot be cured, the GP can co-ordinate the palliative care phase of their life, with the support of inpatient and community palliative services, including bereavement support. GPs are central to this holistic approach to patient-centred care of AYA patients with cancer.