i’m not just a child. i’m a daughter. i’m a son. i’m also a friend, a parent, a wife, a...
DESCRIPTION
Top 5 Causes of Death* in yr olds % of all deaths Road traffic accidents35.6 Neoplasms 10.8 Other accidents 8.0 Nervous system & sense organs 6.7 Suicide 6.2 *ICD-9 categories in England and WalesTRANSCRIPT
I’m not just a child. I’m a daughter. I’m a son.
I’m also a friend, a parent, a wife, a husband…
Cancer in Young People is Rare
North of England Cancer Network• Average 100 young people diagnosed
with cancer per year*25 cases 16 – 18 yrs old75 cases 19 – 24yrs old
• 1% increase per year
*NYCRIS data 5yr period 2001- 2005 & NECN 2007 data
But…
Top 5 Causes of Death* in 15-19 yr olds
% of all deathsRoad traffic accidents 35.6Neoplasms 10.8Other accidents 8.0Nervous system & sense organs 6.7Suicide 6.2
*ICD-9 categories in England and Wales 1976-2000
Common Teenage Cancers
Soft tissue sarcomas
Skin cancer
Lymphoma
Bone cancers
Testicular cancer
Brain tumours
Leukaemia
Percentage Distribution of Cancer Cases by Age Group (yrs)
Age Group (rank)
15 - 19 20 - 24
Lymphoma 27.3 (1) 24.0 (1)
Leukaemia 15.1 (2) 7.7 (5)
Carcinoma 11.3 (3) 21.1 (2)
Malignant Brain Tumours 0.8 (4) 7.7 (5)
Bone Tumours 9.7 (5) 3.4 (8) Germ Cell Neoplasms 9.6 (6) 16.9 (3)
Soft Tissue Sarcoma 6.3 (7) 4.7 (7)
Malignant Melanoma 5.9 (8) 10.1 (4)
Miscellaneous and Unspecified 4 4.4
Overall 5-year Survival by Time Period(13-24 year olds)
% surviving in time period
79-84 85-89 90-95 96-01
Leukaemia 32 43 47 53Lymphoma 76 81 82 86CNS Tumours 66 71 74 73Bone Tumours 39 54 51 51Soft Tissue Sarcomas 53 54 55 57 Germ Cell Tumours 79 85 91 94Melanoma 74 86 86 90Carcinoma 74 86 86 90All Cancers 64 72 74 77
Survival Outcomes (Challenges)
• Improvement in all but bone and soft tissue sarcomas
• Females fared better than males – (except germ cell tumours 91% v 87% p = 0.1)
• For all cancers (except ALL, CNS, STS)* 13-16 year olds worse off than younger or older
• Improvements have lagged behind advances in childhood cancer
Reasons for Poorer Survival
• Delay in diagnosis? • Is delay due to patient or
professional?• Is treatment appropriate? For this
specific tumour and its biological features• Are young patients allowed to make
treatment decisions?• What is clinical entry rate?• Who decides treatment?
Who Should Treat Young Peopleand Where?
• Paediatricians and adult physicians• Paediatric nurses and adult trained
nurses• Tail end of embryonal tumours, the
rise of carcinomas• Pressing emotional and physical
needs
Other Challenges
• Physical appearance and self esteem are critical
• Fertility and sexuality • Loss of peer support/friendships • Disruption of crucial phase of
education/career• Loss of independence, normality
What is important to a teenager with cancer?
Maintaining newly
established independence
Getting better!
Support from their friends
Having a voice, a choice - and some control!
Maintaining their education
The support of theirfamily
Having a future
Improving Outcomes Guidance in Young People with Cancer*
• All patients aged 16 – 18 years inclusive must be referred to a Principal Treatment Centre & Young People for Treatment
• All patients aged 19 – 24 years inclusive must be offered referral to a Principal Treatment Centre (Young People) for treatment
• All patients 19 – 24 years inclusive must be discussed at both a site-specific MDT meeting and a TYA MDT meeting
NICE Improving Outcomes in Children & Young People with Cancer August 2005
By 2010/11
• Teenage Young Adult (TYA) MDT• TYA Principal Treatment Centre • TYA Supportive and Palliative care• Increased Access to Clinical Trials• Peer Support• TYA Workforce
Challenges for Allied Health Professionals?
• Variety of different professional groups at different stages in the patient pathways
• Appropriate referral at right time• Active role played by patient and their
families/carers• Survivors of CNS malignancy
Thank You
Suzanne ThompsonYoung People Cancer Services, North of England Cancer Network
[email protected] 4971536