The Need for Change Why we need a new model of care for Adolescents & Young Adults with Cancer . . . a document for

1. The Need for ChangeWhy we need a new model of care for Adolescents & Young Adults with Cancer. . . a document for discussion

2. Introduction • There is growing momentum internationally for greater attention to be given to the treatment and support provided for Adolescents and Young Adults (AYA) with cancer. • This presentation summarises The Need for Change – principally, we know the need exists because improvement in survival for this group is lagging significantly behind other ages. Why is this the case? • The cancers in this age group are rare, but we treat these patients in hundreds of non-specialist hospitals around Australia (for example) • Access to clinical trials is poor, despite the strong evidence that trials and different protocols make a huge difference to outcomes • Support needs for this group are unique and great, yet age-appropriate support services are generally not provided for this group in our system. • Many in Australia, New Zealand and internationally are calling for a new model of care for AYA cancer patients. We are participating in processes throughout the country in developing a new model of care for discussion and implementation in coming years. The content of this presentation is based on a presentation made at the Improving the Management of Cancer Services conference in Melbourne, 2nd March 2006, by Tracey O'Brien1, Anne Senner1, David Thomas2, Claire Treadgold3 and Andrew Young3 1Centre for Children’s Cancer & Blood Disorders, Sydney Children’s Hospital, Randwick; 2OnTrac@PeterMac, Peter MacCallum Cancer Institute, 3CanTeen Australia.

3. Survival Gap: Improvement in relative survival for 15-30 year-olds is lowest of all age groups Improvement in Relative Survivalby Age, 1982-1997 All Invasive Cancer Data Courtesy C Stephenson, AIHW Australia United States 2 Average Annual % Change 1 0 0 5 10 15 20 25 30 35 40 50 60 70 80 90 Age at Diagnosis (Years) Courtesy of Archie Bleyer

4. Survival Gap: For some cancers in particular, the survival gap remains very significant Survival by Cancer Type for 15-19 Year-Olds; 1986-1996 US SEER Survival Gap Courtesy of Archie Bleyer

5. The Need for Change There is a need for a new model of care for AYA cancer patients because • The cancers are rare, but the patients widely dispersed • Access to clinical trials is poor • Support needs for this group are high

6. AYAs have a mix of paediatric & adult cancers, but treatment is determined mostly by age AIHW Data – 12-24 Age Group (Australia)

7. AYA patients in Australia are treated at a wide range of institutions (example: Victoria) Courtesy David Thomas, Peter MacCallum Cancer Centre

8. However, many studies show that outcomes are best at centres with a critical minimum caseload • Germ cell tumour patients treated at community centres had 1.5 times the death rate of those at cancer centres (Davis et al 1987) • Leukaemia patients at centres with less than 5 patients per year had higher treatment mortality and treatment failures, 10% lower 2-year survival than centres with 40 or more patients (Horowitz et al 1992) • Bone cancer patients at non-specialist centres have 57-65% amputation rate vs 10-20% at osteosarcoma specialist centres (Bacci et al 2004)

9. The Need for Change There is a need for a new model of care for AYA cancer patients because • The cancers are rare, but the patients widely dispersed • Access to clinical trials is poor • Support needs for this group are high

10. There are far fewer AYA patients on clinical trials or at specialised institutions Comparison of Participation in Specialist Treatment and Trials by Age, USA Not at Cooperative Group Institution 92% At Cooperative Group Institution, not on Trial On Cooperative Group Trial The adolescent/ young adult gap in clinical trials 79% 40% Number of Patients 60% 7% 21% 33% 29% 60% 50% 11% 6% 10% 2% 0-4 5-9 10-14 15-19 20-30 Age Courtesy of Archie Bleyer

11. Participation in clinical trials in the AYA age range is also limited in Australia Participation in Clinical Trials by Age 1992-1996 (Vic) 90% 60% % Patients on Trial 30% 0% 0-15 16-19 20-24 Age

12. IRSG NWTSG SWOG Pediatric Division POG CALGB Pediatric Division CCG Improvement in survival for children in USA coincides with clinical trials Annual Cancer Mortality Rateamong US children < 15 years of age 8 Mortality per 100,000, Age- Adjusted 6 ( ) 4 2 1950 1960 1970 1980 1990 Courtesy of Archie Bleyer

13. Strong correlations between survival and accrual to clinical trials have been found (USA) 2.4% Soft-Tissue Sarcomas P=0.003 1.2% 0% Average Annual Change 5 Yr Survival -1.2% 30% -2.4% 20% -3.6% 0% 10% 20% 30% 2% Accrual onto Clinical Trials (%) Accrual % Average Annual Change 5 Yr Survival 10% 1% 0% 0% -1% -2% -3% 0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45+ Age Bleyer et al 2003

14. Australian research also shows differences in participation in trials and in outcomes Mitchell et al. MJA 2004; 180: 59-62

15. Survival differs by as much as 50% on different protocols (ALL, France) Paediatric Protocol Adult Protocol Boissel et al, JCO, 2003

16. The Need for Change There is a need for a new model of care for AYA cancer patients because • The cancers are rare, but the patients widely dispersed • Access to clinical trials is poor • Support needs for this group are high

17. I would that there were no age between sixteen and three and twenty, or that youth would sleep out the rest; for there is nothing between but getting wenches with child, wronging the ancientry, stealing, fighting… William Shakespeare: The Winters Tale - act III, scene iii

18. What is happening? • Carrying out crucial developmental tasks • Physical and sexual maturity • Acquiring skills needed to carry out adult roles • Gaining increased autonomy from parents • Realigning social ties with members of both the same and opposite gender • Social skills developed through: • Peer oriented interaction • Distinct from child/adult patterns • Distinct from later adult pairing

19. What is happening? • Autonomy • Development of self image • Relationships • Life planning • Family • School • Apprenticeships • University Cancer

20. “My friends were supportive from diagnosis and were very much a part of my coping. Being around them made me feel normal.” “Seeing those two guys made a big difference in how Joel felt those early days. The gave him back a sense of normalcy.”

22. Effective support has been shown to improve QoL outcomes • A 1995 study showed improved “success rates” for those in social support groups compared with and those not:1 1Meyer & Mark, 1995

23. Effective support may also improve treatment compliance for AYAs • For self-administered oral chemo, Tebbi et al. (1986) reported a significant correlation between patient age and compliance, AYA being least compliant. • Kyngas and Rissanen (2001) found compliance of AYA was predictable on the basis of support from parents, nurses, physicians and friends. • Herbertson and Hancock (2005) suggested low compliance as a factor in difference in outcomes of AYA compared with children, suggesting AYA cancer centres as a possible solution.

24. However, support services provided in our hospitals generally don’t meet specific needs • Support services provided across hundreds of adult hospitals vary & are generally far fewer than those provided in specialist paediatric hospitals • Support services provided both in paediatric or adult hospitals are not designed for the AYA age group • Lack of critical mass in either system prevents optimal support service provision

25. Next Steps • Many in Australia, New Zealand and internationally are calling for a new model of care for AYA cancer patients. • If you would like to know more: • Join the informal email AYACG newsgroup by sending an email with the subject line “Opt In” to ayacg@canteen.org.au • Visit the site at www.canteen.org.au/AYACG • Contact the CEO of CanTeen Australia, Andrew Young, at email andrew.young@canteen.org.au phone +61 2 9262 1022