Guideline 76: Long term follow up care or survivors of childhood cancer

Long term follow up of survivors of childhood cancer
Section 8: Patient issues

8.1 Patient information

It is important to keep patients and their families fully informed of the diagnosis, different treatment 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.

8.2 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 (see section 2.3). 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.

8.3 Useful contact details

This section contains contact details for organisations which provide different levels of support and further information for patients. There are also many small local charities that provide additional support. A list of these can be obtained from the UKCCSG website (www.ukccsg.org/public/index.html and click on the “Links” button).

Cancer and Leukaemia in Childhood (CLIC)
CLIC, Abbey Wood Business Park
Filton, Bristol, BS34 7JU
Tel: 0845 301 0031, Fax: 0117 311 2649
Email: clic@clic.org.uk, Website: www.clic.org.uk

Children with Cancer and Leukaemia Advice and Support for Parents (CCLASP)
Suite 5, Leith Walk Business Centre, 108/152 Leith Walk, Edinburgh, EH6 5DT
Tel: 0131 467 7420, Fax: 0131 467 7421
Email: cclasp@hotmail.com

Macmillan CancerLine
Macmillan Cancer Relief,
89 Albert Embankment, London, SE1 7UQ
Freephone (Mon - Fri 9am - 6pm): 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 9673106
Website: www.naccpo.org.uk

Sargent Cancer Care For Children (Scotland)
5th Floor, Mercantile Chambers, 53 Bothwell Street, Glasgow, G2 6TS
Tel: 0141 572 5700, Fax: 0141 572 5701
Email: glasgow@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: 0207 387 1000, Fax: 0207 387 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