Long-term follow-up (LTFU) is the term used to describe the ongoing check ups that your child will need after treatment for a haematology or oncology condition.
While the treatment has been successful for treating your child's original condition, we need to monitor for any problems related to the original treatment that may develop later on.
Why does my child need long-term follow-up?
Chemotherapy, radiotherapy and surgery are important methods for treating a variety of malignant and non-malignant childhood conditions, and many children's lives are saved as a result. However, there is a very small chance that some of the treatments your child received might cause problems in the future.
The aim of long-term follow-up is to monitor your child regularly so that we can diagnose any new problems and treat them as early as possible. Sometimes it is necessary to refer your child to other specialists to treat specific problems.
Your child will be referred to the LTFU team when he or she is at least five years from the end of treatment. Some of the follow-up may be shared with your local hospital. Clinic appointments are usually annual to begin with, but as your child grows older, these appointments may become less frequent. It is important to keep coming to clinic appointments, even if your child seems completely healthy because problems can develop many years after the original treatment.
What happens during a LTFU clinic appointment?
The LTFU clinic appointment is a check up to see how your child is progressing. While your child is young, we will measure his or her weight and height at each appointment to make sure that he or she is growing and progressing through puberty normally.
Your child will have their blood pressure checked and sometimes need blood tests or urine tests. Other tests will be arranged as necessary such as a dexa scan to monitor bone strength, an ECHO to monitor the heart function, lung function tests, and audiology to monitor hearing.
During each visit there will be an opportunity to discuss any concerns you might have with the specialist nurse or doctor.
What happens when my child approaches 16 to 18 years old?
Young adults are encouraged to start attending clinic appointments on their own. This gives the opportunity to have a confidential chat about issues such as relationships, fertility and their past treatment. They may not feel able to discuss such issues in the presence of others. It is also important that they start to take responsibility for their own health. Young people need to understand about their past disease and treatment and the risk for late problems developing.
At around 16 to 18 years, young people will be invited to attend a transition appointment in preparation for transfer to adult healthcare. They will be provided with an individual treatment summary, care plan, Aftercure booklet and treatment related factsheets and have an opportunity to discuss any concerns.
Young adults will either continue long term follow up at University College London Hospital (UCLH) or with their family doctor (GP).
What happens if my child develops a problem in between clinic appointments?
If your child has a regular childhood illness, like a cough or cold, please telephone your family doctor (GP). If you are concerned about emotional or physical problems that may be related to past treatment you can ring the LTFU team for advice.
Last reviewed by Great Ormond Street Hospital: October 2010
Ref: 2010F0752 © GOSH Trust October 2010
Compiled by the Long-Term Follow-up team in collaboration with the Child and Family Information Group
This information does not constitute health or medical advice and will not necessarily reflect treatment at other hospitals. If you have any questions, please ask your doctor. No liability can be taken as a result of using this information.
