Caring for Teenagers with Cancer Are they different?

If only there was a Manual

Defining “Adolescence” “Our youth love luxury; they have bad manners, contempt for authority, they show disrespect for elders and love chatter in place of exercise” Socrates

Is it? Chronological Physical (Phenotype) Cognitive / Psychological Social / Societal ALL

Social Development Developing independence Reliance / importance of peer relationships Family / parents Dependents Sexuality Social Development Developing independence Reliance / importance of peer relationships Family / parents Dependents Sexuality Psychological Development Risk-taking behavior Sexuality - relationships Body image Empowerment - control Exploring boundaries Psychological Development Risk-taking behavior Sexuality - relationships Body image Empowerment - control Exploring boundaries Full-time Education Employment Financial independence Dependents Full-time Education Employment Financial independence Dependents

many aspects of develpoment lie on a continuum. functional imaging data - neurological development continues into late teens / early adulthood

Teenage Cancers Late onset paediatric tumours Age specific tumours Early onset adult tumours

Teenage Cancers

Incidence increasing: age group 1.2% year on year cases / yr TYA’s with cancer > Children Largest increase in age group 2nd Commonest cause of death Survivorship advances not comparable to children

CCLG

Challenges 13-24yrs DiseaseSocial Education / Employment

Challenges Access Prompt diagnosis & access to clinical trials Integrating paediatric “generic” cancer care model with adult “site-specific” cancer model. Supportive care addressing many of the psycho- social aspects of adolescent development Training & Education of health-care professionals dealing with TYA.

Access to clinical trials

The debate Who? Paediatric Oncologist / Haematologist Medical Oncologist / Adult Haematologist Clinical Oncologist Who? Paediatric Oncologist / Haematologist Medical Oncologist / Adult Haematologist Clinical Oncologist Where? TYA Specialist Unit Paediatric v Adult Specialist Centre DGH “Virtual” Unit Where? TYA Specialist Unit Paediatric v Adult Specialist Centre DGH “Virtual” Unit How? Paediatric “Generic” model Adult “ Site-specific” model How? Paediatric “Generic” model Adult “ Site-specific” model Unified TYA Model

The way forward?

Where are we now?

Psychosocial factors in that group Special biological factors relating to the aetiology and behaviour of cancer in that age group Research into the optimal provision of health care for patients in that age group and in particular to provide the evidence base for the present and future NICE Improving Outcomes Guidance for teenagers and young adults with cancer Occasionally to develop and promote new specific therapeutic trials in this age group ensuring adequate statistical power is obtained by appropriate national and international collaboration. ๏ ๏ Benchmarking trial availability and access ๏ ๏ Evaluating relevance and activity in other CSG’s and CSDG’s ๏ ๏ Cancer registration for TYA ๏ ๏ Identifying priorities for health service research ๏ ๏ Survivorship and late effects issues

Place of care..

Thank you