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The Need for Change

Why we need a new model of care for Adolescents & Young Adults with Cancer

. . . a document for discussion

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.

2 The content of this presentation is based on a presentation made at the

Improving the Management of Cancer Services

conference in Melbourne, 2 nd Tracey O'Brien 1 , Anne Senner 1 , David Thomas 2 , Claire Treadgold 3 and Andrew Young 3 March 2006, by 1 Centre for Children’s Cancer & Blood Disorders, Sydney Children’s Hospital, Randwick; 2 OnTrac@PeterMac, Peter MacCallum Cancer Institute, 3 CanTeen Australia.

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Survival Gap: Improvement in relative survival for 15-30 year-olds is lowest of all age groups Improvement in Relative Survival by 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 Age at Diagnosis (Years) 60 70 80 90

Courtesy of Archie Bleyer

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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

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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

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AYAs have a mix of paediatric & adult cancers, but treatment is determined mostly by age Brain & CNS 7% Other 13% Skin melanoma 25% Leukaemias 10% Lymphomas 18% Connective & Soft Tissue 4% Thyroid gland 7% Head & Neck 3% Bone & articular cartilage 5% Testis 8%

AIHW Data – 12-24 Age Group (Australia)

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AYA patients in Australia are treated at a wide range of institutions (example: Victoria)

All hospitals Peter MacCallum Alfred Monash Box Hill Royal Melbourne Austin Repat MC St Vincent's Western Hospital Cabrini Royal Children's Freemasons Frankston St Vincent' Private Northern Melbourne Private Royal Women's Mercy Mercy private Ballarat Warringal Latrobe Regional Epworth Maroondah Goulburn Valley Dandenong William Buckland Other (< 20 admissions each)

Total admissions

Genito urinary Colo rectal Breast < < < 32

143

27 7 9 6 7 < 10 < < < < < 7 < 5 < < < < < < < 30

79

5 < < 5 < < < < < < < 5 < < < < < 6 < 85

320

43 17 15 20 18 14 7 9 18 < 10 5 5 8 < < 5 10 < 6 < < lung < < < < < < < < < 6

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< < < Skin (mel) Haema tologica l Gynae cologica l 29

120

21 < 15 < < < 5 9 < 15 14 < < < 107 54 36 48 33 44 10 24 13 31 8 20 7 < < 7 114

624

8 11 < < < 6 8 13 < 7 < 6 64

201

49 25 < < < 5 < < 7 < < < < < < 8 < < < 5 Head & neck < < 21

85

21 < 7 < 9 < 7 < < < < < < < < Upper GI < < 8

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< < 6 5 < < < < < < < < CNS Other

All cancer

< 5 18

159

20 20 18 17 19 11 < < < 8 < < < < < 5 6 < 69

379

63 22 30 15 19 19 35 15 6 8 7 < 9 6 9 < < 7 < 6 < 7 <

364 155 140 119 116 105 80 61 59 51 49 40 36 21 20 20 476 2177 31 30 29 29 29 28 23 23 22 21

Courtesy David Thomas, Peter MacCallum Cancer Centre

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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)

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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

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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 At Cooperative Group Institution, not on Trial On Cooperative Group Trial

40% 60%

0-4

7% 33% 60%

5-9

Age 21% 29% 50%

10-14

79% 11% 10%

15-19

92% 6% 2%

20-30 The adolescent/ young adult gap in clinical trials Courtesy of Archie Bleyer

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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% 30% 0% 0-15 16-19 20-24

Age

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Improvement in survival for children in USA coincides with clinical trials Annual Cancer Mortality Rate among US children < 15 years of age 8 Mortality per 6 100,000, Age Adjusted

( )

4 2 1950 1960 SWOG Pediatric Division CALGB Pediatric Division 1970 1980 IRSG NWTSG POG CCG 1990

Courtesy of Archie Bleyer

Strong correlations between survival and accrual to clinical trials have been found (USA)

13 2% 1% 0% -1% -2% -3%

Soft-Tissue Sarcomas

2.4% 1.2% 0% -1.2% -2.4% -3.6% 0%

P=0.003

10% 20%

Accrual %

30% 30% 20% 10% 0% 0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44

Age

45+ Bleyer et al 2003

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Australian research also shows differences in participation in trials and in outcomes

Mitchell et al. MJA 2004; 180: 59-62

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Survival differs by as much as 50% on different protocols (ALL, France) Paediatric Protocol Adult Protocol

Boissel et al, JCO, 2003

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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

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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

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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

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What is happening?

• Autonomy • Development of self image • Relationships • Life planning – Family • School – Apprenticeships – University

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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.”

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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 1 Meyer & Mark, 1995

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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.

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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

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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 [email protected]

– Visit the site at www.canteen.org.au/AYACG – Contact the CEO of CanTeen Australia, Andrew Young, at email [email protected]

phone +61 2 9262 1022