16. Follow up of survivors of childhood cancer

In this series featuring information for patients and professionals taken from SIGN’s evidencebased guidelines, we reproduce the ‘information for discussion with patients and carers’ section from SIGN guideline number 76, on long term follow up of survivors of childhood cancer.

Long term follow up of survivors of childhood cancer

It is important to keep patients and their families fully informed of the diagnosis, different treament options, likely short and long term consequences and of the necessity for vigilance over possible long term side-effects of treatment. Patients and their families should be reassured that if signs are picked up early, many potential problems can be avoided and that it is essential for them to attend regular review appointments.

The information given should be relevant to the particular point in the journey for the child and the family and in an appropriate format, which may include written information. The child and their family must be able to comprehend treatment options in order to make informed decisions with the support of health professionals, whether in the community or in hospital.

Continuity of care

This group of patients often has a large number and variety of health professionals looking after their care. A discussion involving all the main health professionals and patients, parents or carers, at an appropriate time in the patient journey, would offer an opportunity to decide on a follow up strategy and clarify who will be responsible for specific aftercare.

It should be recognised that teenagers may not want to be seen by paediatric services and that adult services may not be appropriate to follow up survivors of childhood cancers. Individual solutions may need to be found for each specific circumstance. In the long term, it is important that future medical encounters (including those with dentists and opticians) are informed by a full medical history.

This is especially important as the child becomes an adult and if the patient moves to another health region or to another country.

Some form of patient-held record may be worth considering for these patients, as they are often the best informed about their treatment history. For those that are not, a patient-held record will give them that information. Some form of continuity of care is important and this may be one of the roles of the designated key worker. A good working relationship with the key worker is an essential part of the long term care of survivors of childhood cancers as it allows the patients and families to remain informed about possible complications and the health professionals informed about the child’s progress.

Reproduced with permission from SIGN 76. Long term follow up of survivors of childhood cancer – A national clinical guideline. Edinburgh: Scottish Intercollegiate Guidelines Network, 2004.

Useful contact details
Children with Cancer and Leukaemia Advice and Support for Parents (CCLASP)
Unit 24, North Leith Sands, Edinburgh EH6 4ER
Tel: 0131 467 7420 fax: 0131 467 7421 email: cclasp@hotmail.com
Cancer and Leukaemia in Childhood (CLIC)
CLIC, Abbey Wood Business Park, Filton, Bristol BS34 7JU
TeI: 0845 301 0031 fax: 0117 311 2649 email: clic@clic.org.uk
website: www.clic.uk.com
Macmillan Cancer Relief
89 Albert Embankment, London SE1 7UQ
Freephone (Mon-Fri 9 am-6 pm) 0808 808 2020
textphone 0808 808 0121 email: cancerline@macmillan.org.uk
website: www.macmillan.org.uk
Maggie’s Centres Scotland
The Stables,Western General Hospital, Crewe Road South, Edinburgh EH4 2XU
Tel: 0131 537 3131 fax: 0131 537 3130 email: maggies.centre@ed.ac.uk
website: www.maggiescentres.org
National Alliance of Childhood Cancer Parent Organisations (NACCPO)
3 Churchview Close, Bestwood Country Park,Arnold, Nottingham NG5 9QP
Tel: 0115 967 3106 website: www.naccpo.org
Sargent Cancer Care for Children
Griffin House, 161 Hammersmith Road, London W6 8SG
Tel: 020 8752 2800 fax: 020 8752 2806 email: care@sargent.org
Tak Tent Cancer Support Scotland
Flat 5, 30 Shelley Court, Gartnavel Complex, Glasgow G12 0YN
Tel: 0141 211 0122 fax: 0141 211 3988 email: tak.tent@care4free.net
website: www.taktent.org.uk
Teenage Cancer Trust
38 Warren Street, London W1T 6AE
Tel: 020 7387 1000 fax: 020 7387 6000 email: tct@teencancer.bdx.co.uk
website: www.teencancer.org
The United Kingdom Children’s Cancer Study Group (UKCCSG)
Aims to improve the management of children with cancer and to advance
the knowledge and study of childhood malignancy.
website: www.ukccsg.org
A list of small local charities that provide additional support can be obtained
from www.ukccsg.org/pub.htm
Adapted from SIGN 76. Long term follow up of survivors of childhood cancer – A national clinical guideline. Edinburgh: Scottish Intercollegiate Guidelines Network, 2004.

Guidelines in Practice, February 2004, Volume 7(2)
© 2004 MGP Ltd
further information
| subscribe