Teenagers and Young Adults with Cancer Chemotherapy Conference 19 th March 2009 Linda Devereux Associate Director.

Teenagers and Young Adults with Cancer

Chemotherapy Conference

19th March 2009

Linda DevereuxAssociate Director

• NICE IOG Published August 2005

• Principal treatment centres for children and young people

• Shared care arrangements

• Care delivered through MDTs

• Age appropriate facilities for all

• Entry into clinical trials

Key Messages for Commissioners

‘A small but uniquely vulnerable group…..new clinical collaborations that cross site-specialised models.

The need for all young people to benefit from the expertise of site-specific MDTs and the new TYA MDTs with unhindered access to age-appropriate care environment and psychosocial support is an essential aspect of the NICE IOG’

Professor Mike Richards, National Cancer Director/

Sheila Shribman, National Director for Children

– National Advisory Group

Key Messages for Commissioners

• All patients should be discussed at both a site-specific and TYA MDT meeting

• All patients aged 16-18 years should be referred to a principal treatment centre

• All patients should be offered referral to a principal treatment centre

• The TYA MDT should have a role in co-ordinating treatment, psychosocial care and peer contact/support wherever young people are treated

• Robust arrangements for transition should be in place

Key elements of the MCCN strategy

• Designated Principal Treatment Centre at Clatterbridge Centre for Oncology

• Treatment and care concentrated in a limited number of Trusts• Teenage and Young Adult MDT working closely with site-

specific MDTs and the Paediatric Oncology MDTs• TYA 4-bedded unit at CCO – planned for summer 2009• Dedicated haematology inpatient and day case facilities at

Royal Liverpool Hospital• Treatment of young people with paediatric type cancers (up to

19 years) in the Teenage Cancer Trust Unit at Alder Hey Children’s Hospital

• Specialist care will continue to be provided in specialist centres

Royal Liverpool University HospitalLevel 1 to 4 HaematologyBone Marrow Transplant ServiceSpecialist Testicular SurgerySoft Tissue Sarcoma Surgery

TYA MDT

Clatterbridge Centre for Oncology

ChemotherapyRadiotherapy

Linked diagnostic & treatment centres

Alder Hey HospitalPaediatric type cancer

to age 20

Principal Treatment Centre

Specialist Trusts

Diagnostic Group No. diagnosed

Leukaemias 7

Lymphomas 18

CNS 8

Bone <5

Germ cell 11

Skin 11

Other 16

Total 72

16 – 24 yrs diagnosed 2005 MCCN residents

Hospitals attended 16 – 24 yrs diagnosed 2005

MCCN residentsHospital attended Total

Alder Hey 4

Arrowe Park 10

Clatterbridge Centre for Oncology 49

Countess of Chester 6

Royal Liverpool and Broadgreen 27

Aintree 15

Walton 8

Warrington 10

Whiston 20Total 129

Who Cares for Young People?MCCN Care Pathways

Dr Nasim Ali

Lead Clinician for TYA MDT

Clatterbridge Centre for Oncology

Introduction• Teenagers and young adults fall into care gap

between paediatric and adult oncology services• TYA require special attention as poorer

outcome without this• Young people should have access to age

appropriate care as well as clinical expertise• Centralised system- unique physical, social,

educational needs as well as clinical needs recognised and supported by peers and professionals

Epidemiology of Cancer in TYA• Cancer is more common in young people aged

15-19 than in children (incidence = around 150-200 per million)

• Incidence rates in young adults aged 20-24 higher than rates observed in the 15-19 age group (226 /million)

• Profile of disease differs from that seen at younger ages- transitional pattern between that seen in children and 20-24 year olds

• The pattern of occurrence in the 20-24 age group more closely resembles that seen in adults

Cancer in TYA

• Late ‘Paediatric’ tumours- eg Rhabdomyosarcoma, Wilms, Neuroblastoma

• ‘Age specific’ tumours- eg bone tumours and germ cell tumours

• Early onset carcinomas- eg melanoma, thyroid carcinoma, nasopharyngeal carcinoma

Some ‘Common’ Tumours

• Ewing’s Sarcoma

• Osteo sarcomas

• Soft Tissue Sarcomas

• Hodgkin’s Disease

• Non Hodgkin’s Lymphoma

• Leukaemia

• Improved survival

• Increased incidence and prevalence

• Cancer is an important cause of death in children and young people

• Less clear data in TYA than children

• Late effects in survivors

Role of the Young Persons MDT

TYA MDT

• Multidisciplinary team• Discussion of all patients diagnosed with

cancer aged 16-24• Based at Principal Treatment Centre• Coordinating function for treatment,

psychosocial care and peer contact/support wherever they are receiving care

Multidisciplinary team• Medical & Clinical Oncologists• Haematologists• Social Worker• Psychologist• Palliative Care• Physiotherapist• Occupational therapist• Radiographer• Lead Nurse• Specialist Nurse• MDT Coordinator

Clatterbridge Centre for Oncology TYA 16-24 years MDT Newly Diagnosed Notification Patient

Pathway

Referral to TYA MDT Coordinator / TYA Team from all peripheral TrustsMDT weekly (Thursday a.m)

Medical & Clinical OncologistPaediatric OncologistHaematologist

Lead Nurse CCOAlder Hey Macmillan Outreach Team support 16 yrs up to 19. 19 -24 Palliative Care CCO

Clic Sargent SocialWorker CCO- 16-24, 18 year old

treated at Alder HeyAlderHey 16-17 years supported

byAlder hey team. 16-24 inclusive for North Wales supported by North

Wales Clic Sargent

Clic Sargent Psychologist 16-24 yrs

AHP’sOT & Physio

Outcome of MDT sent to referring clinician, GP, hard copy in notes. Member of team / lead Nurse to contact Patient / specific Specalist Nurse / Social worker / Psychologist

Internal NotificationMDT__________________Hospital ______________

Patients may be referred back to MDT for discussion at any time

Referral and outcomes

• Referral Form

• Outcomes form

• Distribution of outcomes to referring clinicians, GP, MDT members

• Patients can return to MDT at anytime

Principal Treatment Centre

• CCO

• Associated centres- RLUH (haematology), Alder Hey, Walton

• Development of Teenage and Young Adult unit at CCO

• Weekly TYA MDT

Case History• 22 year old female- single mother of three• Clear Cell sarcoma of foot diagnosed 2006• Resected • Recurrence in groin lymph nodes 2007-

treated with resection followed by radiotherapy

• 2009- multiple pulmonary metastases

Case History (contd)

• Treatment options – palliative chemotherapy

• For discussion with patient

• Patient DNA clinic on many occasions in fear of discussing management and anxieties

• Role of Social Worker

Current functioning and Future

• Establishing functioning of MDT

• Develop the roles of the members

• Ensure patients receive best specialist clinical care and support

• Ensure clear clinical pathways

• Entry into Clinical trials

• Smooth transition to adult services

Thank You

Any Questions?