The Youth Booth is a safe haven for AYA cancer patients where they can watch a movie, do some homework, surf the internet and play a video game, all while receiving their treatment (chemotherapy). This Youth Booth is a first in Africa and will change the approach to cancer treatment for AYAs.
We are looking to implement a long term vision for Ari’s Cancer Foundation, which aligns with our sense of duty to assist, in particular, young adults living with cancer.
To give context to the need and purpose of AYA units we asked Professor Alan Davidson and Professor Jeanette Parkes to provide further information:
Paediatric oncologists define children with cancer as all those under the age of 15 years. They suffer from distinct forms of cancer which are different from those seen in adults, and they require access to specialized medical and psychosocial care. Fortunately most paediatric cancers respond well to chemotherapy, and integrated multidisciplinary care has produced excellent outcomes in recent years with survival rates in the order of 75-80%.
Adolescents and young adults (AYA) with cancer are defined as those aged 15 to 39 years, and they have not benefitted to the same degree from these advances. There are unique biological, clinical, psychosocial, and survivorship issues in this age group. Adolescents suffer a different set of cancers such as breast, lymphoma, melanoma, sarcoma and thyroid cancer, as well as testicular and cervical or ovarian stromal cell tumours. These specific types of cancers may present differently, and the signs and symptoms can be overlooked by physicians, who may have a low index of suspicion for cancer in the AYA population, or by the young people themselves, who may see themselves as invulnerable to serious disease.
Once these young people are on treatment they often find themselves alienated within the context of cancer services. Teenagers in paediatric units struggle with crying babies and an environment which does not recognize their need to have some autonomy. Older adolescents and young adults in adult units are equally vulnerable to alienation in services that are not set up to deal with their psychosocial needs.
The gold standard has been set by the UK Teenage Cancer Trust whose most famous patron is ‘The Who’ lead singer Roger Daltrey. The TCT has helped to create 28 dedicated units for AYAs with cancer in England, Wales and Scotland.
South Africa faces a unique set of challenges. The Department of Health has set the age limit for paediatrics at 13 years. Despite this most paediatric cancer units continue to attend to patients until their 15th birthday and some have been able to care for adolescents up to the age of 18 years. But without official recognition there are very few dedicated adolescent services, and AYAs with cancer continue to be cared for by either paediatric or adult services in suboptimal circumstances.
The economic landscape does not currently lend itself to the creation of specialized stand-alone units but there are things we can do to make life better for our AYA patients. The initiative by Ari’s Cancer Foundation (Live Laugh Love) is one such example. One of my teenage patients whooped with joy when he saw the design for a work-station and pod. It’s intended that these units be installed in all paediatric and adult units in the Western Cape, where they will be able to serve all AYA patients. In addition they will be a point of constancy for patients who need to be referred from one service to another, thus serving as a bridge for the focused care of AYA patients.