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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
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