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Cancer in the Adolescent and Young Adult (AYA) New Zealand AYA Cancer Service Dr Rob Corbett Clinical Director South Island Child Cancer Service Cancer in AYA Lost Tribe Cancer in AYA: importance Few unique cancers Fewer AYA cured compared with kids Unique psychosocial issues No dedicated services “they fall through the gaps” Cancer in AYA: incidence 15 - 19 years old: – – – 190 - 200 new diagnoses per million per annum Annual incidence steadily increasing: – SEER (USA): 0.9% – England: 1% Cancer in AYA: types Cancer in Adolescents 15-19 years SEER 1975-98 ALL 6% other 12% Testis 9% AML 5% NHL 8% Ovary 7% HD 15% Thyroid 7% CNS 10% STS 7% Ewings 2% Melanoma 7% Osetosarcoma 5% ALL AML NHL HD Melanoma Ewings Osetosarcoma STS CNS Thyroid Ovary Testis other Majority adult cancers occurring early Minority children’s cancers occurring late Small minority specific to age-group: – – bone sarcomas germ cell tumours Cancer in AYA: cure 1.4% increase in cure rate: – – – – per annum 0-14 years old 1975-1995 estimated cure 80.4% No such improvement for AYA: – – outcome 1985-1992 vs 1992-1998 15-29 year olds only age group without improvement UK data: children 0-14 years old Relative changes in survival 15-30yrs 1975-80 1981-86 1987-92 1993-98 70 70 70 70 children 65 70 75 80 adult 45 50 60 65 No improvement in AYA survival for >1/4 century Cancer in AYA: cure Possible reasons for relatively poor outcome: – biology of: – – – the cancer the host type of treatment delivered participation in clinical trials where and by whom treatment is given Children’s Oncology Group AYA Subcommitee: – – host of retrospective studies prospective trials Cancer in AYA: biology Little known Survival decreases with age: – – – ALL Soft tissue sarcoma Ewing sarcoma Toxicity increases with age: – – – Vincristine Ifosfamide High-dose methotrexate Cancer in AYA: type of treatment Acute lymphoblastic leukaemia French trials: between 1993 – 2000 for 15 – 20 yrs old trial treated by number of adolescents median age 5 year survival FRALLE 93 paediatric oncologists 77 LALA 94 adult haematologists 100 15.9yrs 78% 17.9yrs 45% Cancer in AYA: type of treatment “The practice of using the same chemotherapy protocols to treat an adult population that spans 5 - 6 decades in age should be reexamined; it is possible that adolescents and young adults (< 30 years old) may be relatively under-dosed.” Cancer in AYA: clinical trials Conducted by international, cooperative cancer groups – not sponsored by pharmaceutical companies Direct correlation between trial participation and cure Trial participation: – – 50% in kids <1% in 15-29 year olds Cancer in AYA: clinical trials 10-14yr 15-19yr 20-24yr Bone tumours clinical trial overall survival 46 81 6 44 0 63 Leukaemia clinical trial overall survival 65 56 13 41 12 50 Lymphoma clinical trial overall survival 40 85 10 80 2 82 Soft tissue sarcoma clinical trial overall survival 8 77 0 71 5 75 Mitchell 2004 Cancer in AYA: place of treatment “Pediatricians administer these treatments with a military precision on the basis of a near-religious conviction about the necessity of maintaining prescribed dose and schedule come hell, high water, birthdays, Bastille Day , or Christmas.” Cancer in AYA: place of treatment Australian study 15 – 19 year olds in Victoria Cancer in AYA: cooperation “There is a danger that professional rivalries may interfere ….in order to succeed there needs to agreement between medical oncologists, haematologists, surgical oncologists and paediatric oncologists …….but no one of these groups has the skills to manage all the various cancers diagnosed in adolescence” Cancer in AYA “small children disturb your sleep, large children your life” Hebrew saying Cancer in AYA: vehicle for change New Zealand Cancer Control Strategy (August 2003): – – 6 over-arching goals: – – – – – reduce the incidence and impact of cancer reduce inequalities primary prevention screening and early detection diagnosis and treatment QoL including rehabilitation and palliative care research and surveillance www.moh.govt.nz/cancercontrol Cancer in AYA: vehicle for change New Zealand Cancer Control Strategy – Goal 3: ensure effective diagnosis and treatment of cancer to reduce morbidity and mortality Objective 4: improve the quality of care delivered to adolescents with cancer and their family and whanau Action Plan 2005-2010 (March 2005) – develop regional adolescent oncology services: maximize accrual onto clinical trials MDT care including psychosocial encourage most appropriate medical personnel to treat a designated cancer establish a working party AYA Cancer Working Party Medical Oncology Haematology Radiation Oncology Clinical Psychology AYA Key Worker AYA Physician Canteen Surgery Paediatric Oncology Ministry of Health * = co-chair - Garry Forgeson * - Ruth Spearing - David Hamilton - Heather McDowell - Heidi Watson - Sue Bagshaw - David Pearce and Roger Hill - Gary French - Mark Winstanley - Rob Corbett * - Marjan van Waardenburg - Rachel Stockwell - Deborah Woodley and Jane Craven Cancer in AYA: service specifications “ Our youth love luxury; they have bad manners, contempt for authority, they show disrespect for elders and love chatter in place of exercise. Children are now tyrants, not the servants of their households. They no longer rise when elders enter the room. They contradict their parents, chatter before company, gobble up their food, and tyrannise their teachers.” Plato quoting Socrates Cancer in AYA: tier 3 service specifications Objectives - to maximise: – – – – cure rate entry onto age-appropriate clinical trials the psychosocial care delivered to the patient and their family/whanau adopt Youth Development approach to assessment and care 12-24 years of age Cancer in AYA: service specifications national NZACS Advisory Group 3 regional services: – – – Auckland and Hamilton Wellington and Palmerston North Christchurch and Dunedin Cancer in AYA: service specifications Multidisciplinary teams: – – – – – treatment specialists fertility specialist diagnostic support specialists physical support psychosocial support MDT: – – in each cancer centre communicating between cancer centres Cancer in AYA: service specifications AYA Cancer Key Worker: – – – – – – case-manage ensure coordination promote holistic approach to psychosocial and educational care empower young people interact with other key workers coordinate MDT meetings Cancer in AYA: service specifications Place of treatment: – – – – age of patient needs and wishes of the AYA type of cancer maturational stage Cancer in AYA: service specifications Maturational stage: – – – – pubertal status cognitive development need for family support living arrangements Cancer in AYA: service specifications Funding: – – – – Key Workers Clinical Leadership Clinical Psychology Clinical Research Associates Operational July 2010 Cancer in AYA: service specifications National AYACS Advisory Group – – – – matrix of specialty and geography funding treatment guidelines development of regional services Cancer in AYA: development of regional services Southern Cancer Network – – South Is AYACS Advisory Group Establish liaison between Southern & Canterbury DHBs: – meetings with Dunedin clinicians commence MDT videoconferencing 13 September Involve 3 remaining DHBs Canterbury DHB – – haematologists “on board” medical oncologists “interested” but overwhelmed 4 stages of man: Infancy Childhood Adolescence Obsolescence Art Linkletter