TYA with cancer; TYA with cancer; treatment and treatment and service needsservice needs

Louise SoanesLouise SoanesTCT Nurse Consultant for AYATCT Nurse Consultant for AYA

The Royal Marsden NHS Foundation The Royal Marsden NHS Foundation TrustTrust

Every Child Matters: Change for Every Child Matters: Change for Children (2004)Children (2004)

► Whole system reform of children’s services Whole system reform of children’s services focussing on the well-being of children and young focussing on the well-being of children and young people from birth to age 19 with the people from birth to age 19 with the child/teenager at the centre.child/teenager at the centre.

► The Government's aim is for every child/teenager, The Government's aim is for every child/teenager, whatever their background or their whatever their background or their circumstances, to have the support they need to:circumstances, to have the support they need to: Be healthy Be healthy Stay safe Stay safe Enjoy and achieve Enjoy and achieve Make a positive contribution Make a positive contribution Achieve economic well-beingAchieve economic well-being

National Service Framework for National Service Framework for children, young people and maternity children, young people and maternity

services (2004)services (2004)

► Sets standards for children's health and social Sets standards for children's health and social services, and the interface of those services with services, and the interface of those services with education. education.

► 10-year programme intended to stimulate long-10-year programme intended to stimulate long-term and sustained improvement in children's term and sustained improvement in children's health, aims to ensure fair, high quality and health, aims to ensure fair, high quality and integrated health and social care from pregnancy, integrated health and social care from pregnancy, right through to adulthood (19 yrs)right through to adulthood (19 yrs)

NHS Cancer Plan (2000)NHS Cancer Plan (2000)

► reduce death rates reduce death rates ► improve quality of life improve quality of life ► promoting early detection and screeningpromoting early detection and screening► addressing health inequalities addressing health inequalities ► reduction of waiting timesreduction of waiting times► establish national standards for cancer establish national standards for cancer

servicesservices► invest in specialist palliative careinvest in specialist palliative care► expand and develop the cancer workforce, expand and develop the cancer workforce,

cancer facilities, and cancer research. cancer facilities, and cancer research.

Cancer Reform Strategy Cancer Reform Strategy (2007) (2007)

►Advisory PanelAdvisory Panel Service modelsService models CommissioningCommissioning Costs, benefits and value for moneyCosts, benefits and value for money Clinical outcomesClinical outcomes Public awareness and early detectionPublic awareness and early detection Patient experiencePatient experience

Outcomes in TYA cancer?Outcomes in TYA cancer?

► The improvements in outcomes for TYA lag behind The improvements in outcomes for TYA lag behind those seen in cancer treatment for the very old and those seen in cancer treatment for the very old and the very young (Levi 2003, Thomas et al. 2006) the very young (Levi 2003, Thomas et al. 2006)

► Haase and Phillips (2004) credit poorer outcomes to:Haase and Phillips (2004) credit poorer outcomes to: unique aetiologies of cancer in TYAunique aetiologies of cancer in TYA medical and psychological needs of this groupmedical and psychological needs of this group under- representation of TYA in clinical trails under- representation of TYA in clinical trails consequences of coping at a time when they are facing consequences of coping at a time when they are facing

difficult physical, emotional and social challenges of difficult physical, emotional and social challenges of adolescence. adolescence.

► Yet TYA with cancer are 'invisible' as the research data Yet TYA with cancer are 'invisible' as the research data rarely distinguishes this age group from children or rarely distinguishes this age group from children or older people. older people.

What are the issues?What are the issues?

► Difficulties in gaining reliable statisticsDifficulties in gaining reliable statistics► TYA often subject to late diagnosisTYA often subject to late diagnosis► Low enrolment of TYA in clinical trialsLow enrolment of TYA in clinical trials► Level of skills and expertise of workforce vary Level of skills and expertise of workforce vary

across the UKacross the UK► Placed at the crossover of children’s (generic) and Placed at the crossover of children’s (generic) and

adult (site specific) cancer servicesadult (site specific) cancer services► Variation in protocols used to treat Variation in protocols used to treat

History of TYA in healthcare History of TYA in healthcare provisionprovision

► 1950s1950s Stuart-Clarke A (1953) The nursing of adolescents in adult Stuart-Clarke A (1953) The nursing of adolescents in adult

wards. wards. The LancetThe Lancet. 1 1349. 1 1349 Platt Report (1959) Platt Report (1959) The welfare of children in hospitalThe welfare of children in hospital. .

HMSO. London.HMSO. London.   

► 1990s1990s National Association of the Welfare of Children in Hospital National Association of the Welfare of Children in Hospital

(1990) (1990) Setting standards for adolescents in hospital.Setting standards for adolescents in hospital. NAWCH. LondonNAWCH. London   

Department of Health (1991) Department of Health (1991) Welfare of Children and Young Welfare of Children and Young

PeoplePeople. Department of Health. London.. Department of Health. London.    Royal College of Nursing (1994) Royal College of Nursing (1994) Caring for adolescentsCaring for adolescents. .

Royal College of Nursing. London.Royal College of Nursing. London.   

Paediatric oncologist/haematologist

Paediatric units Adult unitsTYA units

TYA oncologist/haematologist

TYA nurse Adult nurses

Tumour specific consultant

Children’s nurse

► NICE IOG Published NICE IOG Published August 2005August 2005

► Covers all cancers in Covers all cancers in patients 0-25 years oldpatients 0-25 years old

► Implemented 2010/2011Implemented 2010/2011► Peer review starts 2010Peer review starts 2010► Children’s measure out Children’s measure out

in August 2009in August 2009► TYA measure in progressTYA measure in progress

Prevention & screeningPrevention & screening

► Smoking cessationSmoking cessation► Safe sun Safe sun

http://www.shunburnhttp://www.shunburn.co.uk/.co.uk/

► Breast and testicular Breast and testicular self examinationself examination

► Healthy Healthy eating/drinkingeating/drinking

► Human papilloma Human papilloma virus (HPV)virus (HPV)

DiagnosisDiagnosis

►Self awarenessSelf awareness TYA under-educated in their own healthTYA under-educated in their own health

►Access and delayAccess and delay TYA often reluctant to visit the GPTYA often reluctant to visit the GP Parental surveillance reduces as children growParental surveillance reduces as children grow Low profile of TYA cancer in primary and Low profile of TYA cancer in primary and

secondary caresecondary care Lack of clear referrals for TYA with suspected Lack of clear referrals for TYA with suspected

cancerscancers

Do we have the right Do we have the right information?information?

► Cancer registries collect details on all new cases of cancer that Cancer registries collect details on all new cases of cancer that occur in a given population.  From this they calculate incidence occur in a given population.  From this they calculate incidence and survival rates for that population.  They also collect details and survival rates for that population.  They also collect details on the care that cancer patients receive.on the care that cancer patients receive.

► The Cancer Reform Strategy (2007) specifies the collection and The Cancer Reform Strategy (2007) specifies the collection and analysis of information on cancer in teenagers and young adults analysis of information on cancer in teenagers and young adults as an early product expected from the recently formed National as an early product expected from the recently formed National Cancer Intelligence Network (NCIN).Cancer Intelligence Network (NCIN).

► To facilitate these reforms, North West Cancer Intelligence To facilitate these reforms, North West Cancer Intelligence Service nominated as the lead registry for cancer in TYA.  Service nominated as the lead registry for cancer in TYA. 

► Source of information for cancer in this age group, providing Source of information for cancer in this age group, providing intelligence at national level on where, how and by whom TYA intelligence at national level on where, how and by whom TYA patients are managed, and reporting on inequalities related to patients are managed, and reporting on inequalities related to access to services and outcome. access to services and outcome. 

Information seekingInformation seeking

►AYA with cancer indicate that they AYA with cancer indicate that they prefer to visit cancer websites that prefer to visit cancer websites that contain cancer-related information, contain cancer-related information, provide the ability to chat with AYA provide the ability to chat with AYA with cancer, and offer some type of with cancer, and offer some type of game. game.

Joshua D. Schiffman, et al (2008) Internet use among adolescent and young adults Joshua D. Schiffman, et al (2008) Internet use among adolescent and young adults (AYA) with cancer Pediatr Blood Cancer;51:410-41(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.

Access to clinical trialsAccess to clinical trials

► Significantly smaller proportion of TYA are Significantly smaller proportion of TYA are entered into clinical trials compared to entered into clinical trials compared to older/younger patients.older/younger patients.

► For all cancers 19% of patients aged 15-24 For all cancers 19% of patients aged 15-24 years were entered into a clinical trialyears were entered into a clinical trial

► Possible reasons:Possible reasons:service configurationservice configurationpatient choicepatient choiceavailability/designavailability/designconsent processconsent processpatient informationpatient information

Principal Treatment CentresPrincipal Treatment Centres

► Referral pathways into PTC must be agreed Referral pathways into PTC must be agreed for each cancer typefor each cancer type

► PTC must be able to sustain full range of PTC must be able to sustain full range of services and defined levels of appropriately services and defined levels of appropriately trained stafftrained staff Workforce Workforce Education and trainingEducation and training

► Place of carePlace of care All care for those 16-19yrs will need to be provided All care for those 16-19yrs will need to be provided

in age appropriate facilitiesin age appropriate facilities Patients >19yrs must have unhindered access to Patients >19yrs must have unhindered access to

facilities and supportfacilities and support

What is age appropriate What is age appropriate care?care?

► Access to expertise: cancer expertise relevant to young people & access to Access to expertise: cancer expertise relevant to young people & access to expertise of working with young people through the whole pathway (bench to expertise of working with young people through the whole pathway (bench to bedside)bedside)

► Access to peers: for at least some of their treatment to be with patients of a Access to peers: for at least some of their treatment to be with patients of a similar age rangesimilar age range

► Culture & Facilities: Care delivered in an environment & atmosphere that is Culture & Facilities: Care delivered in an environment & atmosphere that is sensitive to the needs of young people sensitive to the needs of young people

Social relationshipsSocial relationships► ““I’m still looking for someone I’m still looking for someone

who has the same cancer as who has the same cancer as me” (female aged 19 with me” (female aged 19 with rare lung tumour)rare lung tumour)

► ““I have not seen anybody yet I have not seen anybody yet on my treatments, or even my on my treatments, or even my check ups that’s actually my check ups that’s actually my age” (female aged 23 with age” (female aged 23 with HL)HL)

► ““You think is there nobody You think is there nobody like me…so it would be nice to like me…so it would be nice to have a chat with somebody have a chat with somebody my own age, see how they my own age, see how they cope, if they’ve got kids too…cope, if they’ve got kids too…you know, how they’ve you know, how they’ve managed” (female aged 26 managed” (female aged 26 lymphoma)lymphoma)

Multi-disciplinary teamsMulti-disciplinary teams

► MDTs should aim for holistic and seamless MDTs should aim for holistic and seamless care throughout disease trajectory and care throughout disease trajectory and across healthcare settings (Jeffries & Chan across healthcare settings (Jeffries & Chan 2004). 2004). Care will be delivered throughout the pathway Care will be delivered throughout the pathway

by MDTsby MDTs Patients will have access to both tumour Patients will have access to both tumour

specific expertise and age appropriate MDTspecific 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.

Shared careShared care► Clinical networks between PTCs and identified local servicesClinical networks between PTCs and identified local services► Clinical leadership Clinical leadership ► Agreed treatment and care protocolsAgreed treatment and care protocols► Defined areas of responsibilityDefined areas of responsibility► Clear lines of communication between PTC, shared and Clear lines of communication between PTC, shared and

primary care.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

Supportive care in TYA Supportive care in TYA cancercancer

► Cancer care can be described a system of complex Cancer care can be described a system of complex individualized interventions delivered at various times, in individualized interventions delivered at various times, in different locations with various intentionsdifferent locations with various intentions

► Richardson et al (2007) define supportive care as Richardson et al (2007) define supportive care as encompassing aspects of physical, emotional, spiritual, encompassing aspects of physical, emotional, spiritual, environmental, social, sexual, financial and cultural careenvironmental, social, sexual, financial and cultural care

► Move from survival to maintaining /improving QoLMove from survival to maintaining /improving QoL

► Patients’ views are clearly important in identifying their Patients’ views are clearly important in identifying their supportive care needs, and studies have shown the difficulties supportive care needs, and studies have shown the difficulties experienced by TYA in articulating these needs (Zebrack experienced by TYA in articulating these needs (Zebrack 2006)2006)

National Cancer Survivorship National Cancer Survivorship InitiativeInitiative

► "Survivorship; Living with and Beyond Cancer" (Chapter 5 of "Survivorship; Living with and Beyond Cancer" (Chapter 5 of the Cancer Reform Strategy).the Cancer Reform Strategy).

► Workstream focusing on 'Children & Young People Surviving Workstream focusing on 'Children & Young People Surviving Cancer' Consequences of cancer treatment apparent, some Cancer' Consequences of cancer treatment apparent, some differences from children and adults, duration of life beyond differences from children and adults, duration of life beyond cancer could be 50 years plus. cancer could be 50 years plus.

► Need to ensure a normal future - physically, emotionally and Need to ensure a normal future - physically, emotionally and educationally is crucial. educationally is crucial.

► The emphasis will be to look at the provision of care and The emphasis will be to look at the provision of care and support in an holistic way so that individualized needs are met support in an holistic way so that individualized needs are met consistently.consistently.

The person in the patientThe person in the patient

► Individualized care Individualized care ► Positive relationships with staffPositive relationships with staff► Preparation (informing, supporting)Preparation (informing, supporting)► Transition – managed into specific local Transition – managed into specific local

servicesservices

► Experience of hospital is shaped by four factorsExperience of hospital is shaped by four factors► Individual staff memberIndividual staff member► The teamThe team► The institutionThe institution► Wider health systemWider health system

Gibson F (2005) Developing Alternative Models of Follow-up care in young adult survivors Gibson F (2005) Developing Alternative Models of Follow-up care in young adult survivors of childhood cancer. CLIC/Sargentof childhood cancer. CLIC/Sargent

Challenges faced by 19 to 24 year Challenges faced by 19 to 24 year oldsolds

► Local services can be limited e.g. youth Local services can be limited e.g. youth services targeted at under 19sservices targeted at under 19s

► Transition to adult services - at different Transition to adult services - at different points depending on the need points depending on the need HealthHealth Local authorityLocal authority EducationEducation

Challenges faced by 19 to 24 year Challenges faced by 19 to 24 year oldsolds

► Impact on Impact on getting/maintaining a job getting/maintaining a job

► Impact on financesImpact on finances

► Impact on living Impact on living arrangementsarrangements

► May have own dependentsMay have own dependents

► Importance of getting Importance of getting practical support increases practical support increases with agewith age

Supporting changeSupporting change

► Partnership between Partnership between Cancer Action Team Cancer Action Team and Teenager Cancer and Teenager Cancer TrustTrust

► Regional Programme Regional Programme mangersmangers

► Focused resourceFocused resource► Support local service Support local service

transformationtransformation► Share good practice Share good practice

Challenges and opportunitiesChallenges and opportunities► Cross boundary workingCross boundary working► Approach to care across disease site specific teamsApproach to care across disease site specific teams► Access to age appropriate facilitiesAccess to age appropriate facilities► Establishing TYA shared careEstablishing TYA shared care► Developing TYA specific survivorship programmesDeveloping TYA specific survivorship programmes► Planned transition Planned transition between children and young people’s services and between young

people’s and adult services.► Improvement in outcomes and experience for TYAImprovement in outcomes and experience for TYA► Model of care for other groups?Model of care for other groups?