Teenagers and Young Adults with Cancer

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Teenagers and Young Adults with Cancer
Linda Devereux Associate Director

• Chemotherapy Conference
• 19th March 2009

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• 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

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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

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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

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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 Childrens Hospital
• Specialist care will continue to be provided in
  specialist centres

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Royal Liverpool University Hospital Level 1 to 4
Haematology Bone Marrow Transplant
Service Specialist Testicular Surgery Soft Tissue
Sarcoma Surgery
Alder Hey Hospital Paediatric type cancer to age
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Principal Treatment Centre
TYA MDT Clatterbridge Centre for Oncology
Chemotherapy Radiotherapy
Linked diagnostic treatment centres
Specialist Trusts
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16 24 yrs diagnosed 2005 MCCN residents
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Hospitals attended 16 24 yrs diagnosed 2005
MCCN residents
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Who Cares for Young People?MCCN Care Pathways

• Dr Nasim Ali
• Lead Clinician for TYA MDT
• Clatterbridge Centre for Oncology

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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

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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

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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

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Some Common Tumours

• Ewings Sarcoma
• Osteo sarcomas
• Soft Tissue Sarcomas
• Hodgkins Disease
• Non Hodgkins Lymphoma
• Leukaemia

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• 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

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Role of the Young Persons MDT
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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

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Multidisciplinary team

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

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

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Referral and outcomes

• Referral Form
• Outcomes form
• Distribution of outcomes to referring clinicians,
  GP, MDT members
• Patients can return to MDT at anytime

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Principal Treatment Centre

• CCO
• Associated centres- RLUH (haematology), Alder
  Hey, Walton
• Development of Teenage and Young Adult unit at
  CCO
• Weekly TYA MDT

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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

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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

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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

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Thank YouAny Questions?