ABSTRACT
The past decade has seen the development of a network of specialist teenage and young adult cancer centres across the UK. These provide expertise in treatment across the spectrum of malignancies that occur in young adults, supported by multi-disciplinary teams that are able to provide the psycho-social support so necessary for this age group, and in a hospital environment that encourages social interaction while delivering expert medical care. The development of teenage and young adult (TYA) cancer as a specialty gained establishment backing in 2005, through NICE guidance which mandated that all 16- to 24-year-olds should be referred to specialist TYA cancer centres. The foundation of this achievement was set by a handful of committed individuals and the Teenage Cancer Trust, a charity that has acted as patient advocate and political pressure group, and that has brought to public attention the need for change while providing support for specialist staff and hospitals.
Subject(s)
Community Networks/organization & administration , Neoplasms/therapy , Patient Care Team , Adolescent , Adolescent Health Services/organization & administration , Health Services Needs and Demand , Humans , Physician-Patient Relations , Social Support , Transition to Adult Care/organization & administration , United Kingdom , Young AdultABSTRACT
Increasing the awareness of the clinical and psychosocial needs that are particular to adolescents and young adults (AYA) was a top priority, as was strengthening advocacy efforts to empower and support this group. To date, AYA advocates had some success in generating public awareness and building a solid clinical justification for increased focus on this population. It had been established that the economic burden of their mortality was significant, their cancers were unusual, their medical care was often inadequate, and their outcomes for many cancers had not improved in the past 3 decades. As the awareness and advocacy campaign continued to grow and evolve across the globe, it was an important goal to integrate the efforts of all stakeholders to ensure that it progressed with a single, consensual, focused message identifying a common priority for action. By coordinating the efforts of the scientific, medical, and advocacy communities, it was possible to amplify their separate efforts and activities and more efficiently achieve large-scale change in the world of AYA oncology.
Subject(s)
Health Knowledge, Attitudes, Practice , Neoplasms/psychology , Patient Advocacy , Adolescent , Canada , Health Priorities , Health Services Needs and Demand , Humans , Neoplasms/diagnosis , Neoplasms/therapy , Young AdultABSTRACT
Strong advocacy efforts are vital to ensuring that the unique medical, psychosocial, support and educational needs of teenagers/adolescents and young adults living with cancer are met. Advocacy groups can help bring individuals interested in change together, and provide coordinated education and support services as well as policy analysis and response. Recent improvements in services and treatment indicate the success of organised and professional advocacy in addressing the needs of teenage/adolescent and young adult survivors. The advocacy community can continue to make great advances by joining together to support worldwide recognition of the unique needs of this population, the development of specialist facilities for teenagers/adolescents and young adults, increased awareness of cancer in this population to combat delayed diagnosis and improve access and quality of care, and alleviating the challenges of working with a multidisciplinary health care team.
Subject(s)
Adolescent , Adult , Neoplasms , Patient Advocacy , Survivors , Australia , Goals , Health Services Needs and Demand/statistics & numerical data , Humans , New Zealand , Organizations, Nonprofit/organization & administration , Social Support , United Kingdom , United StatesABSTRACT
In 2004, 350 teenagers and young adults (TYAs) attended the third Find Your Sense of Tumour Conference for cancer patients. This provided a unique opportunity to survey a large group of patients regarding their cancer experience. Analysis of the results showed that delegates had both positive and negative experiences of the cancer journey and had clear views regarding service provision. The survey showed that the majority of TYAs with or who have had cancer would like to be treated on a specialist unit. There are currently 7 Teenage and Young Adult Units developed by Teenage Cancer Trust within the UK; however, a large number of patients do not have access to these specialist services. Despite the increased attention to TYA health needs there are still a number of issues relating to cancer services that need addressing as a matter of urgency in order to ensure that future patients receive a timely diagnosis, together with appropriate care that meets the specific needs of this unique client group.