Late Effects Assessment Programme (LEAP) Rosemary Simpson LEAP Coordinator/Nurse Specialist, Wellington Belynda Wynn LEAP Coordinator / Nurse Specialist, Christchurch

Childhood Cancer – About 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)

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 (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….