TYA with cancer; treatment and service needs. Louise Soanes TCT Nurse Consultant for AYA The Royal Marsden NHS Foundation Trust. Every Child Matters: Change for Children (2004).
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TCT Nurse Consultant for AYA
The Royal Marsden NHS Foundation Trust
Whole system reform of children’s services focussing on the well-being of children and young people from birth to age 19 with the child/teenager at the centre.
The Government's aim is for every child/teenager, whatever their background or their circumstances, to have the support they need to:
Enjoy and achieve
Make a positive contribution
Achieve economic well-being
Sets standards for children's health and social services, and the interface of those services with education.
10-year programme intended to stimulate long-term and sustained improvement in children's health, aims to ensure fair, high quality and integrated health and social care from pregnancy, right through to adulthood (19 yrs)
reduce death rates
improve quality of life
promoting early detection and screening
addressing health inequalities
reduction of waiting times
establish national standards for cancer services
invest in specialist palliative care
expand and develop the cancer workforce, cancer facilities, and cancer research.
Costs, benefits and value for money
Public awareness and early detection
The improvements in outcomes for TYA lag behind those seen in cancer treatment for the very old and the very young (Levi 2003, Thomas et al. 2006)
Haase and Phillips (2004) credit poorer outcomes to:
unique aetiologies of cancer in TYA
medical and psychological needs of this group
under- representation of TYA in clinical trails
consequences of coping at a time when they are facing difficult physical, emotional and social challenges of adolescence.
Yet TYA with cancer are 'invisible' as the research data rarely distinguishes this age group from children or older people.
Stuart-Clarke A (1953) The nursing of adolescents in adult wards. The Lancet. 1 1349
Platt Report (1959) The welfare of children in hospital. HMSO. London.
National Association of the Welfare of Children in Hospital (1990) Setting standards for adolescents in hospital. NAWCH. London
Department of Health (1991) Welfare of Children and Young People. Department of Health. London.
Royal College of Nursing (1994) Caring for adolescents. Royal College of Nursing. London.
Tumour specific consultant
Covers all cancers in patients 0-25 years old
Peer review starts 2010
Children’s measure out in August 2009
TYA measure in progress
TYA under-educated in their own health
Access and delay
TYA often reluctant to visit the GP
Parental surveillance reduces as children grow
Low profile of TYA cancer in primary and secondary care
Lack of clear referrals for TYA with suspected cancers
Cancer registries collect details on all new cases of cancer that occur in a given population. From this they calculate incidence and survival rates for that population. They also collect details on the care that cancer patients receive.
The Cancer Reform Strategy (2007) specifies the collection and analysis of information on cancer in teenagers and young adults as an early product expected from the recently formed National Cancer Intelligence Network (NCIN).
To facilitate these reforms, North West Cancer Intelligence Service nominated as the lead registry for cancer in TYA.
Source of information for cancer in this age group, providing intelligence at national level on where, how and by whom TYA patients are managed, and reporting on inequalities related to access to services and outcome.
AYA with cancer indicate that they prefer to visit cancer websites that contain cancer-related information, provide the ability to chat with AYA with cancer, and offer some type of game.
Joshua D. Schiffman, et al (2008) Internet use among adolescent and young adults (AYA) with cancer Pediatr Blood Cancer;51:410-41
I was diagnosed with Advanced Stage Hodgkin Lymphoma, a form of Lymphatic Cancer in 2007. I was 21. I couldn’t believe it. Up until that point I had always been more worried about getting hit by an asteroid than been diagnosed with Cancer, it just seemed more likely.
Significantly smaller proportion of TYA are entered into clinical trials compared to older/younger patients.
For all cancers 19% of patients aged 15-24 years were entered into a clinical trial
Referral pathways into PTC must be agreed for each cancer type
PTC must be able to sustain full range of services and defined levels of appropriately trained staff
Education and training
Place of care
All care for those 16-19yrs will need to be provided in age appropriate facilities
Patients >19yrs must have unhindered access to facilities and support
MDTs should aim for holistic and seamless care throughout disease trajectory and across healthcare settings (Jeffries & Chan 2004).
Care will be delivered throughout the pathway by MDTs
Patients will have access to both tumour specific expertise and age appropriate MDT
The TYA MDT at the PTC should have a role in coordinating treatment, psychosocial care and peer contact/support for young people wherever they are treated.
Clinical networks between PTCs and identified local services
Agreed treatment and care protocols
Defined areas of responsibility
Clear lines of communication between PTC, shared and primary care.
Three levels of shared care plus TYA Network Care
patients aged 19 and over
who decide to receive all of their treatment in local adult services
place of care identified by commissioners and supported by the PTC
treatment and care is provided in adult cancer services to an individualized treatment plan agreed by the local site-specific MDT and the TYA MDT at the designated PTC
Gibson F (2005) Developing Alternative Models of Follow-up care in young adult survivors of childhood cancer. CLIC/Sargent