TYA with cancer; treatment and service needs

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 1950s 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. 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.

9. 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

11. Prevention & screening • Smoking cessation • Safe sun http://www.shunburn.co.uk/ • Breast and testicular self examination • Healthy eating/drinking • Human papilloma virus (HPV)

12. Diagnosis Self awareness 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. 

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 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.

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 15-24 years were entered into a clinical trial Possible reasons: service configuration patient choice availability/design consent process patient information

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

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.

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)

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.

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

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

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?