1. TYA with cancer; treatment and service needs
Louise Soanes
TCT Nurse Consultant for AYA
The Royal Marsden NHS Foundation Trust

2. Every Child Matters: Change for Children (2004)
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:
Be healthy
Stay safe
Enjoy and achieve
Make a positive contribution
Achieve economic well-being

3. National Service Framework for children, young people and maternity services (2004)
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)

4. NHS Cancer Plan (2000) 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.

5. Cancer Reform Strategy (2007)
Advisory Panel
Service models
Commissioning
Costs, benefits and value for money
Clinical outcomes
Public awareness and early detection
Patient experience

6. Outcomes in TYA cancer?
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.

7. What are the issues? Difficulties in gaining reliable statistics
TYA often subject to late diagnosis
Low enrolment of TYA in clinical trials
Level of skills and expertise of workforce vary across the UK
Placed at the crossover of children’s (generic) and adult (site specific) cancer services
Variation in protocols used to treat

8. History of TYA in healthcare provision
Stuart-Clarke A (1953) The nursing of adolescents in adult wards. The Lancet
Platt Report (1959) The welfare of children in hospital. HMSO. London.  
1990s
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.  
The unmet needs of teenagers/young adults within healthcare were first highlighted in
the was the first to seriously consider the developing needs of teenagers/young adults and outlined the need to provide adequate facilities and appropriately trained staff. This is supported by the findings of a national survey undertaken in the UK by the Joint Working Party on Adolescent Health (2001) which showed that only approximately 12% of hospitals had a dedicated service for adolescent medicine (Department of Health 2003). This is despite the calls of the previously mentioned reports, most recently in the National Service Framework (NSF) for Children, Young People and Maternity Services Department for Education and Skills (Department for Education and Skills 2004), and data showing that an average district general hospital serving a population of has at any one time at least fifteen beds occupied by years olds (outside mental health and maternity services) (Department of Health 2003). As well as the professional avocation of dedicated adolescent services being seen as the optimal approach to deliver developmentally appropriate care (Jacobson et al 2000, Payne 2005 et al 2005), teenagers/young adults themselves repeatedly report a desire for dedicated health services to meet their needs (Fisher 1994, Miller et al 1998; Oppong-Odiseng 1997).

9. Paediatric units Adult units TYA units TYA nurse Adult nurses
Paediatric oncologist/haematologist
TYA oncologist/haematologist
Tumour specific consultant
Paediatric units
Adult units
TYA units
TYA nurse
Adult nurses
Children’s nurse

10. NICE IOG Published August 2005
Covers all cancers in patients 0-25 years old
Implemented 2010/2011
Peer review starts 2010
Children’s measure out in August 2009
TYA measure in progress 10

11. Prevention & screening
Smoking cessation
Safe sun
Breast and testicular self examination
Healthy eating/drinking
Human papilloma virus (HPV)

12. Diagnosis Self awareness Access and delay
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

13. Do we have the right information?
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. 
Cancer is the most common disease-related cause of death in teenagers and young adults (TYA), exceeded only by accidents. 
The needs of cancer patients in this age group are different to those of both paediatric and adult patients not only in terms of disease-specific treatment, but also in the context of physical, social and educational development. Interest in addressing TYA cancer needs has increased considerably since the 2005 publication of the guidance “Improving outcomes in children and young adults with cancer” and TYA services are undergoing major changes with plans to centralise services in Principal Treatment Centres.
Cancer registries change the data they collect into information that is used to plan and evaluate cancer services, to undertake research into the causes, prevention and treatment of cancer, and to improve the management of individual patients.
As the only available source of reliable, population-based information on cancer incidence, prevalence and survival rates, cancer registries have an essential role in the implementation and monitoring of key national initiativeswhich aim to improve the quality of care and survival prospects for cancer patients.
 Cancer registries also undertake a range of public health surveillance and health protection functions, with cancer registration information being specifically used to:
monitor trends in cancer incidence, prevalence and survival with time and among different areas and social groups
evaluate the effectiveness of cancer prevention and screening programmes.
evaluate the quality and outcomes of cancer care, through the provision of comparative data about treatment patterns and outcomes
evaluate the effect of environmental and social factors on cancer risk and support other investigations into the causes of cancer.
investigate differences in cancer incidence, survival and access to treatment among social groups and thus contribute to programmes aimed at reducing inequalities in health outcomes
support the work of cancer genetic counselling services for individuals and families who have a higher risk of developing cancer
support recalls of specific groups of cancer patients, for example women who were treated for Hodgkin’s disease with radiotherapy and may have an increased risk of developing breast cancer

14. Information seeking
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

15. I was diagnosed with Advanced Stage Hodgkin Lymphoma, a form of Lymphatic Cancer in 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.

16. Access to clinical trials
Significantly smaller proportion of TYA are entered into clinical trials compared to older/younger patients.
For all cancers 19% of patients aged years were entered into a clinical trial
Possible reasons:
service configuration
patient choice
availability/design
consent process
patient information
There are a number of reasons for the low level of recruitment of teenagers and young adults to trials, particularly for the year-olds. These include inappropriate trial design, poor accessibility to trials for TYAs, and too many young people not being treated by specialist cancer teams. At present, the design and age eligibility criteria for trials tend to reflect whether the trial organisers treat children or adult patients, rather than the biology of the particular cancer, and the age group which it is mostly likely to occur in. Traditionally, trials will have an age cut off between 16 and 20. TYAs are constantly falling through the gap created by the tendency for paediatricians to treat the younger ages, and for the older ages to be treated in adult cancer wards. If we are to see improvements in the treatments and outcomes for TYAs with cancer, there needs to be closer dialogue between research groups when they are planning cancer trials. They should give particular consideration to the specific needs of this over-looked age group so that a more appropriate trial portfolio for TYAs can be established in the UK. Dr Fern said she thought that particular effort was needed to improve the recruitment of year-olds to clinical trials. One of the reasons why there is a relatively higher level of year-olds entering trials is because they tend to be treated in specialised paediatric units, which, in the UK, run Children's Cancer and Leukaemia Group (CCLG) trials. No such co-ordinated body exists for teenagers and young adults aged years. They will most likely be treated in an adult ward and so access to CCLG trials is limited or non existent. Differences in gaining consent for entering a trial between children and teenagers and young adults has been cited as a reason for poor accrual of teenagers and young adults. However, there are currently no data to show whether gaining consent for trial participation is harder to achieve with teenagers and young adults than for adults or children through proxy of their parents, but Whelan believes it should be no different. Dr Whelan said: The problem is not teenagers not wanting to take part in clinical trials, but actually teenagers not being offered the chance to participate. Dr Whelan and Dr Fern feared that significant improvements in outcomes from cancer for teenagers and young adults would remain elusive without a coalition of forces including funders, policy makers, biologists, clinicians and patients.

17. Principal Treatment Centres
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
Workforce
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
IOG defines core components of PTC
Choice of place of care – but with the relevant and necessary information so that choice is informed. Choices research
This is the age of exerting autonomy choosing treatment and place of acre may not be be what what we would choose – but information and decision making must be made in an environment so that TYA (and their family) are heard in a climate of openess and consent. Remembering the decision made today may change.

19. What is age appropriate care?
Access to expertise: cancer expertise relevant to young people & access to expertise of working with young people through the whole pathway (bench to bedside)
Access to peers: for at least some of their treatment to be with patients of a similar age range
Culture & Facilities: Care delivered in an environment & atmosphere that is sensitive to the needs of young people

20. Social relationships
“I’m still looking for someone who has the same cancer as me” (female aged 19 with rare lung tumour)
“I have not seen anybody yet on my treatments, or even my check ups that’s actually my age” (female aged 23 with HL)
“You think is there nobody like me…so it would be nice to have a chat with somebody my own age, see how they cope, if they’ve got kids too…you know, how they’ve managed” (female aged 26 lymphoma)

21. Multi-disciplinary teams
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.
Multi Disciplinary Teams
Increasing specialization and complexity of cancer care has led to the introduction of multi-disciplinary teams (MDTs) for the management of patients with cancer (DH 2000). In the UK, this model has been adopted for delivery of cancer services and site-specific specialist teams meet regularly to discuss patients and make treatment decisions and plans. Teams are constituted according to standard national guidance and peer review audits MDT constitution and other processes, but detailed evaluation of the clinical effectiveness of team working and the quality of team decisions has not been undertaken (Borrill 2000, Haward 2003). Debate continues regarding the definition and limits of multi-disciplinary cancer care (Soothill et al 2001). It has been argued (Earle 2006) that comprehensive MDTs should address the socio-economic, psychosocial & relational effects; as well as the physical effects of cancer, aiming for a holistic and seamless care throughout disease trajectory and across healthcare settings (Jeffries & Chan 2004).
This latter approach has been attempted in AYA cancer care. The Department of Health and NICE (NICE 2005, DH 2008) both recommend that all AYA aged 16–24yrs inclusive should be discussed both at a tumour site-specific MDT meeting and a teenage/young adult MDT (TYA MDT) meeting. The diagnosis and treatment plan for young people will be determined in the site-specific MDT meeting, discussed and agreed with the TYA MDT who will coordinating the delivery of agreed patient-specific treatment and supportive care plans. There are numerous organizational challenges in implementing this service change as the CYPIOG guidance crosses traditional boundaries between child and adult services, and requires the development of teams that function across tumour specific teams and will require setting up new systems for joint working (DH 2008). A national baseline assessment in 2006 highlighted that only a minority of AYA with cancer had access to the expertise of a TYA MDT (DH 2008). Again there seems to be a lack of studies and policy initiatives to explore, explain and understand the operation of such cultures and their effectiveness in patient outcomes.

22. Shared care
Clinical networks between PTCs and identified local services
Clinical leadership
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

23. Supportive care in TYA cancer
Cancer care can be described a system of complex individualized interventions delivered at various times, in different locations with various intentions
Richardson et al (2007) define supportive care as encompassing aspects of physical, emotional, spiritual, environmental, social, sexual, financial and cultural care
Move from survival to maintaining /improving QoL
Patients’ views are clearly important in identifying their supportive care needs, and studies have shown the difficulties experienced by TYA in articulating these needs (Zebrack 2006)
Defining supportive care
Cancer care has evolved in recent years from a focus on survival to maintaining/improving quality of care (DH 2007). This change is in part due to increased survival rates and the re-organization of cancer services (Fincham et al 2005). Such is the shift that cancer care is now described a system of complex individualized interventions delivered at various times, in different locations with various intentions (Verhoef et al 2007). Until recently supportive cancer care has been associated with the amelioration of side effects and symptoms of cancer and its treatment (Hanvey & Finch 2008). Contemporary definitions of supportive care are broader and include processes that help patients to live as well as possible (Trebbit 2001) or to cope with cancer and its treatment throughout the disease trajectory (NICE 2004). Richardson et al (2007) defines supportive care as encompassing aspects of physical, emotional, spiritual, environmental, social, sexual, financial and cultural care. Though increasingly used in the nursing literature supportive care is still not a distinct specialty and is informed by models, frameworks and theories from a variety of sources (Mirando 2006), leading to confusion and under utilization of the few models that do exist in practice (Finch 2000).
As early as 1982 Funch & Mettlin (1982) found a direct correlation between social/professional support and psychological adjustments and a similar correlation between financial support and physical recovery. Later in their study of supportive care O’Bearle & Davies (1992) attempted to define the nature and components of supportive care, but this early study, was limited in terms of its sample size and focus on specialist cancer nurses.
There is increasing evidence to suggest that unmet supportive care needs can have a detrimental effect on patient’s short and long term well being (Bonevski et al 2000, Richardson et al 2007). Patients’ views are clearly important in identifying their supportive care needs, and qualitative studies have shown the difficulties experienced by patients in articulating these needs (Farrell & Lewis 2000, Murphy-Ende 2001, Zebrack 2006a&b). These findings are confounded by the needs of cancer patients being identified by their specific cancer (Thijis-Boer et al 1999, Krishnasamy 2001) rather than their generic supportive care need as a patient (Fincham et al 2005). Other studies reporting high levels of unmet physical/daily living needs have used the Cancer Needs Questionnaire a multidimensional needs assessment instrument with validity and reliability (Sanson-Fisher et al 2000). However, these studies have limitations that may influence the results, such as conceptual uncertainty in defining supportive care needs as problems (Newell 1999), focusing on patients with a specific type or stage of cancer or type of treatment (Youngblood 1995). Findings suggest a need to explore the assessment of needs and how services are provided to meet these across the continuum of care from diagnosis through treatment to survivorship.

24. National Cancer Survivorship Initiative
"Survivorship; Living with and Beyond Cancer" (Chapter 5 of the Cancer Reform Strategy).
Workstream focusing on 'Children & Young People Surviving Cancer' Consequences of cancer treatment apparent, some differences from children and adults, duration of life beyond cancer could be 50 years plus.
Need to ensure a normal future - physically, emotionally and educationally is crucial.
The emphasis will be to look at the provision of care and support in an holistic way so that individualized needs are met consistently.
The focus of this workstream will be to work with health care professionals, charities, patients, and other public sector providers of care and support to make a real difference to the care and support each individual child and young person receives as a cancer survivor.

25. The person in the patient
Individualized care
Positive relationships with staff
Preparation (informing, supporting)
Transition – managed into specific local services
Experience of hospital is shaped by four factors
Individual staff member
The team
The institution
Wider health system
Gibson F (2005) Developing Alternative Models of Follow-up care in young adult survivors of childhood cancer. CLIC/Sargent

26. Challenges faced by 19 to 24 year olds
Local services can be limited e.g. youth services targeted at under 19s
Transition to adult services - at different points depending on the need
Health
Local authority
Education
EWG discussion:
Youth services should read “youth support services”, i.e. including youth, health, psychological etc
If YP is disabled then local services should be accessible – refer to Aiming High for Young People (England and Wales) – application of this may differ locally
YP often not want to be ‘labelled’ as disabled – however, they need this to access other benefits e.g. DLA – education in use of and attitude towards the term is needed, including for practitioners

27. Challenges faced by 19 to 24 year olds
Impact on getting/maintaining a job
Impact on finances
Impact on living arrangements
May have own dependents
Importance of getting practical support increases with age
SG explained:
Education and training importance decreases as age increases.
However still 35% say it is important so still very relevant for these people.
Also age for compulsory education/training is increasing – need to plan for this.

28. Supporting change
Partnership between Cancer Action Team and Teenager Cancer Trust
Regional Programme mangers
Focused resource
Support local service transformation
Share good practice

29. Challenges and opportunities
Cross boundary working
Approach to care across disease site specific teams
Access to age appropriate facilities
Establishing TYA shared care
Developing TYA specific survivorship programmes
Planned transition between children and young people’s services and between young people’s and adult services.
Improvement in outcomes and experience for TYA
Model of care for other groups?