When a CYP no longer receives active treatment in hospital, they will continue to be part of an important aftercare support service which will address all of these issues and concerns.
There are now new models of care and support for people living with and beyond cancer within the NHS system and the CYP will receive follow-up care and support well into adult life. The CYP work stream was one of seven work streams conducting improvement work as part of the National Cancer Survivorship Initiative (NCSI). The aim of this national initiative was to improve models of aftercare provided for those patients surviving cancer, many of whom will need a range of clinical and non-clinical services to enable each of them to live a happy, healthy normal life after their initial treatment for cancer. [1]
I have finished my treatment... what happens next CCLG booklet for young people who have completed their treatment
My child has finished treatment... what happens next CCLG booklet for parents whose children have completed their treatment
Long term follow-up and survivorship
Sometimes, problems related to cancer treatment that occur or persist after treatment is finished are known as late effects. This is why a CYP will be continually monitored and assessed to ensure that if such problems occur, then they will receive the right treatment and support. They will be seen frequently in clinic. How often varies between Principal Treatment Centress, but it is usually every 4-6 weeks during the first year.
Each CYP should receive:
- An end-of-treatment summary which shows all of the different treatments received including the names of any chemotherapy drugs used, surgical procedures undertaken and radiotherapy received.
- A care plan, which should be shared with GP and shared care consultant, outlining:
- number of follow-up visits needed and where they will be
- what blood tests, x-rays or scans are needed to ensure the cancer has not come back and how often these will be performed
- possible late effects and what tests are needed to monitor these Link Late effects
- any additional support needed for education, finances or psychological concerns
- A keyworker whose job is to support young people through the early years after treatment. [2]
Level of follow-up care
CYP will be offered different types of follow-up care which is tailored to individual level of need and depending on previous treatment and current state of physical and psychosocial wellbeing. These may include:
- consultant-led care for patients with more complex health needs
- nurse-led care with a specialist nurse trained to provide follow-up care either face to face or over the telephone
- supported self-management where parents and patients are given the education and information needed to manage the child's health with the support of their GP and the reassurance of being able to re-access the care of the Late Effects team if needed.
Risk stratified care: assessment of risk of medical problems
A risk-based approach allows the medical team and the young survivor to make a decision about the best form of aftercare based on their knowledge of the disease (what type of cancer and what is likely to happen next), the treatment (what the effects or consequences may be both in the short term and long term) and the person (whether they have other illnesses or conditions, and how much support that they feel they need).
Survivors will be treated according to what approach is most suitable, and the level of professional care (illustrated down the left hand side of the triangle) will vary accordingly. Cancer survivors may move between these different options according to how their cancer and its treatment progresses and whether they are more able to manage their disease, or whether they need more help. The proportion of people in each option will vary depending on the tumor type.[3]
Further information
Aftercure.org Aftercure is a resource for teenage and young adult survivors of childhood cancer, produced by CCLG. Aftercure comprises a website/online information, a booklet and factsheets with information about specific late effects
Teenage Cancer Trust: After treatment information (for teenagers)
CLIC Sargent: When treatment ends Information for young people
References
[1] Gibson F, Soanes L (2008) Cancer in Children and young People. Section , chapter23-27. Wiley and sons Ltd
[2] SIGN Guideline; Long term follow up of survivors of childhood caner guidelines page 43. http://sign.ac.uk/guidelines/fulltext/132/index.html accessed 15 March 2016
[3] National Cancer Survivorship Initiative Children and Young People Workstream. Designing and implementing pathways October 2011. Page 20. http://www.ncsi.org.uk/what-we-are-doing/children-young-people/ accessed 15 March 2016