About 2 to 5 years after cancer treatment has finished, your child or young person will transfer into long-term follow-up care. This is often called the Late Effects Assessment Programme (LEAP) and has more focus on long-term problems that may be the result of the disease or treatment. Remember, many young people do not develop any long-term problems.
Key points about long-term follow-up after childhood cancer
- Some cancer treatments can cause health problems that may not happen until many years after treatment has finished.
- These health problems are often called ‘late effects’.
- It's important to remember that many young people don't develop any long-term problems.
Image credit: Canva
What happens at the end of childhood cancer treatment?
Once cancer treatment has finished, your child or young person will keep going to clinics. These will be at one of the following:
- The centre where your child had their treatment.
- Your local shared care centre.
Transferring into long-term follow-up care after childhood cancer
About 2 to 5 years after cancer treatment has finished, your child or young person will transfer into long-term follow-up care. This is often called the Late Effects Assessment Programme (LEAP). This clinic has more focus on long-term problems that may be the result of the disease or treatment. These problems are often called ‘late effects’.
Long-term follow-up is different for everyone who has had cancer, or an illness that needed cancer-like treatment. It will depend on the type of cancer/illness and the treatment your child had. By going to clinic, the healthcare team can check for any late effects that your child may be at risk of developing. The healthcare team can either prevent or manage any problems that do occur.
It's important to remember that many young people don't develop any long-term problems.
What does long-term follow-up after childhood cancer look like?
There are 2 types of long-term follow-up clinics. Both provide the same key follow-up care:
- LEAP team
- joint LEAP/shared care
Read more about long-term follow-up in childhood cancer.
Your child will see the LEAP team in the following regions:
- Christchurch and the remainder of the South Island
The LEAP team may include a paediatric oncologist, a nurse specialist and a clinical psychologist who is available if your child needs psychosocial support at any stage.
Joint LEAP/shared care
Your child will have long-term follow-up at your local shared care clinic, alternating between a visiting oncologist and your local paediatrician. Psychosocial support is also available if your child needs it.
Treatment summary after childhood cancer
When your child is in long-term follow-up, you will receive a copy of their treatment summary. This is sometimes called a ‘health passport’. It has all the important details of your child's treatment. This is helpful for any health professional your child might see in the future.
How long does my child need to be in long-term follow-up care after childhood cancer?
This is different for everyone and often depends on:
- how old your child is
- what treatment they had
- whether they have any late effects that are causing health problems, learning problems or other concerns that affect their quality of life.
Most young people will no longer need to go to a LEAP clinic once they are adults - somewhere between 18 and 21 years of age. Their family doctor and adult health care specialists will continue to see them if necessary.
LEAP team contacts
LEAP Coordinator, Long-Term Follow-up Programme
Starship Blood and Cancer Centre
Starship Children's Health
Private Bag 92024
LEAP Coordinator, Late Effects
Capital and Coast District
Private Bag 7902
Riddiford Street, Newtown
Christchurch and South Island
The following links provide further information about long-term follow up in childhood cancer. Be aware that websites from other countries may have information that differs from Aotearoa New Zealand recommendations.
LEAP resources Paediatric Society of NZ, Starship Foundation & National Child Cancer Network, NZ, 2013
Living beyond cancer Children's Cancer and Leukaemia Group, UK
Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers Children's Oncology Group, US