Dr Helen Jenkinson, Consultant Paediatric Oncologist at Birmingham Children’s Hospital and member of the CCLG Late Effects Group, explains the aftercare pathways now in place for children and young people once cancer treatment finishes.
The significant progress made in treating and caring for children and young people with cancer has resulted in a growing population of survivors. There are currently over 40,000 survivors in the UK.
When treatment finishes
Finishing treatment can be a time of mixed emotions as feelings of relief and pleasure are mixed with uncertainty and worry. A detailed plan of the care a patient can expect from their follow-up team can help lessen some of these worries. When a child has finished treatment, the treating team should provide:
- an end of treatment summary which outlines all the different treatments received including the names of any chemotherapy drugs used, surgical procedures undertaken and radiotherapy received. It is important to keep this somewhere safe for easy access in case you need the details of your treatment in the future such as an antenatal visit or pre-employment health check.
- a care plan, which should be shared with your GP and shared care consultant, outlining:
- frequency of follow-up visits and where they will be;
- what blood tests, x rays or scans are needed to ensure the original cancer has not come back and how often these will be performed;
- possible side effects of treatment (late effects) and what tests are needed to monitor these;
- additional support that may be required such as education, finances or psychological concerns.
- a key worker who will be allocated to support young people through the early years off treatment.
Long-term follow-up care
As time goes on from when the treatment ends, the emphasis of follow-up appointments changes from checking the cancer hasn’t come back to looking for any late effects of treatment. At a point along this pathway (one which will vary between hospitals), a patient’s care will be transferred to the late effects multidisciplinary team (MDT).
A late effects MDT consists of a team of specialists trained to deal with longer term issues that can arise following cancer treatment and the team will have core members consisting of:
- a consultant paediatric oncologist specialising in the late effects of treatment;
- a specialist late effects nurse;
- a endocrinologist;
- a team coordinator.
In addition, the late effects team should have access to allied health professionals, psychological services, fertility specialists and an adult oncologist to support patients as and when required.
The National Cancer Survivorship Initiative has been involved with testing different models of late effects care with the aims of:
- reducing ill health and meeting the physical and psychological needs of patients;
- increasing the proportion of children and young people in education or employment;
- increasing the proportion of cancer survivors able to live independently.
The key principles which new models of care and service developments have been based upon include:
- Ensuring that all survivors have a choice of follow-up service, based upon patient pathways, through their late effects MDT
- Follow-up care is tailored to fit the specific needs of each individual patient
- Patients receive an end-of-treatment summary and care plan which is reviewed and updated regularly
- Patients will have access to a late effects key worker to co-ordinate and streamline their care
- Patients undergo a period of planned transition from paediatric to adult services in order to reduce the number of young people lost to follow-up
- Patients will be given the information and support necessary to self-manage
- Patients must have rapid access back in to late effects services
Patients may be offered different types of follow-up care which is tailored to their individual level of need and dependent upon their previous treatment and their current state of physical and psychosocial well-being. These may include:
- consultant-led care for patients with more complex health needs;
- nurse-led care with a specialist nurse trained to provide long-term follow-up care either face to face or over the telephone;
- supported self-management, when patients are no longer required to attend clinic on a regular basis but are given the education and information needed to manage their own health with the support of their GP and the ability to re-access the care of the Late Effects team should that be required in the future. Some patients will continue to be monitored via postal questionnaires to their GP.
Pathways of care for children and young adult survivors, identifying the key time points throughout the patient journey, have been developed as a standard of care for developing services to aspire to.
Transition to adult services
As young people become adults, their care is likely to move to a late effects team within adult services. The transfer of care from paediatric to adult services is called ‘transition’. There is no right time for transition and a flexible approach is used by most centres depending on the time since diagnosis, current health of the patient and their physical and emotional maturity. It is not a single event but a planned coordinated process where patients are prepared for transfer over a number of months or years, equipped with the necessary information and introduced to their new team in order to maintain continuity of care and ensure that they are not ‘lost’ to follow up.
Evidence-based care for survivors of childhood and young adult cancer
Thanks to huge advances in the care and treatment of children with cancer over the last 40 years, healthcare providers are now faced with the emerging yet welcome challenge of ensuring that each survivor receives high-quality, individualised aftercare which will enable them to achieve their full potential in life.
There is now an evidence-based package of care for the growing number of survivors of childhood and young adult cancer which the late effects community are enthusiastic and dedicated to deliver.
Original published in Contact magazine, issue 62, Spring 2014