Transcript www.centralcancernetwork.org.nz

Late Effects Assessment Programme
(LEAP)
Rosemary Simpson
LEAP Coordinator/Nurse Specialist,
Wellington
Belynda Wynn
LEAP Coordinator / Nurse Specialist,
Christchurch
Childhood Cancer
–
–
–
–
–
About 140-160 children and young adults less
than 18 diagnosed with cancer in NZ/yr approximately 1:520 children less than 16yrs.
Cancer can develop at any age in childhood
Bimodal ages of onset => 2-6 yrs and 12-18yrs
The median age approx. 5 years
Age of onset varies with different tumours
Overall Cancer Frequency (< 15 Years)
Osarc 2.6%
RTB 3.2%
GCT 3.5%
Non-RMS STS 3.5%
RMS 3.6%
Hepatoblastoma 1.3%
Ewings 1.5%
Thyroid 1.1%
Melanoma 1.1%
ALL 23.5
AML
CNS
NBL
Wilm's
ALL 23.5%
Hodgkin’s 4.7%
NHL
Hodgkin's
RMS
NBL 7.9%
NHL 5.7%
CNS 22.1%
Non-RMS
AML 4.7%
GCT
RTB
Wilm’s 6.0%
Osteosar
Hepatobl
Child and Adolescent Cancer Outcome




Mortality rates have declined
dramatically between 1975
to 2000
Overall survival rate is now
80%
Statistically significant
annual increment in survival
of 1.4%
Approx 1 in 500 young
people between ages of 15
to 35 are survivors of
childhood and adolescent
cancer
5 Year survival by cancer type in children 0-14yrs

Research based clinical trials

Increased treatment intensity - direct relationship
with incidence of treatment related physical,
psychological and social sequalae

Supportive care

New modalities
LEAP Background:
Cure at a Cost



Treatments used for childhood cancer are in
conflict with normal growth and development
58% of survivors have one major chronic
health problem
32% of survivors have two or more chronic
problems*
* Stevens et al EJC 1998
LEAP Background:
Late Effects

1 in 6 of childhood and adolescent cancer
survivors will die from
–
–
–
late recurrence
second malignancy
treatment related effect
within 20 years of completing treatment.
LEAP Background:
Late Effects

Endocrine e.g. growth hormone deficiency
Fertility e.g. premature menopause
Sensory e.g. high frequency hearing loss
Organ toxicity e.g. cardiomyopathy
Musculoskeletal e.g. osteoporosis
Neuropsychological e.g. memory impairment
Mobility e.g. vincristine neuropathy
Cosmetic e.g. alopecia

Dental e.g. absence of teeth or roots







What is LEAP?
LEAP
=
Late Effects Assessment Programme
=
Long term follow up care
for survivors of childhood cancer
LEAP Background:
Responding to a Need

Timeline
2000 National Paediatric Oncology Steering group (POSG)
established by MoH to develop national framework for child
cancer services

2003 POSG established dedicated late effects and survivorship
work-stream to develop a national strategy for evaluation and
care of all survivors of childhood cancer

NZ Cancer Control Strategy Action Plan 2005-2010 (Goal 4,
objective 3, phase 1)

October 2005 Cancer Control Council and MoH
supported proposal from POSG

June 2006 – national initiative – ‘LEAP’

National database, outpatient clinics, risk-based
individualised follow-up, nurse-led clinics

Multi-disciplinary: Oncologist, clinical psychologist,
nurse specialist
LEAP-IT




National, Award- Winning Database
Incorporates NZCCR with LEAP
Audit/research statistics
Health Passports
LEAP Client Group



Child / adolescent cancer survivor
Finished disease surveillance (2-5 yrs from
end of treatment)
Transferred / referred to LEAP service (open
referral system)
Pre-Clinic Preparation





Response to immediate health concerns
Review of patient notes
Populate LEAP-IT database
Generate Health Passport
MD Clinic OPA
Coordination of Health / Education
Needs





Refer to medical specialists
Psychosocial assessment
Neuropsych testing, remediation
Referral to community agencies
Therapy
Transfer to Nurse-Led Clinic




AYA (adolescent/young adult) mainly
Developmental transition (sex drugs n rock n
roll)
Service transition (adult specialists / GP)
Open door up to 24 years
LEAP to the future
‘TRANSFERABLE’ models of care



LEAP-IT – Edinburgh, Melbourne…..
Youth transition – General chronic health
care
Adult cancer care….