The number of individuals who survive childhood cancer is increasing. SIGN’s new guideline will help GPs in the lifelong follow up of these patients, says Dr Paul Lim

Continuing advances in the management of childhood malignancies mean that most children can realistically hope for long-term survival. With current fiveyear survival rates of over 70%, it is estimated that by the year 2010 one in 715 of the adult population will be a long-term survivor of childhood cancer.1

Childhood cancer may be treated by surgery, chemotherapy, radiotherapy or bone marrow transplantation or a combination of these modalities. All healthcare professionals who care for patients who have survived childhood cancer need to be aware of the possible consequences both physical and psychological not only of the illness but also of the cancer therapies.

With this in mind SIGN has recently published a new guideline Long term follow up of survivors of childhood cancer. The guideline recommends that patients are followed up for life.

This guideline will be relevant to members of the primary care team as well as those who work in secondary and tertiary centres. GPs see these patients very infrequently and it will provide a valuable reminder to check through the various factors we need to be aware of in their management. The guideline includes a quick reference guide (Figure 1, below) which should be helpful for busy GPs.

Figure 1: Front of the quick reference guide containing key points of the guideline
Figure 1 (continued): Reverse of the quick reference guide containing key points of the guideline
© Scottish Intercollegiate Guidelines Network, 2004

Developing the guideline

There are few randomised controlled trials on childhood cancer survivors, and those that do exist cover very few patients. Controlled group data are often not available or not relevant. However, an extensive literature search identified several hundred articles relevant to the guideline, and 273 of these were appraised in detail.

At the initial development stage of the guideline we had identified 32 questions to be answered in our search for evidence. These were sorted into five separate categories and a subgroup was formed to consider each area.

The five categories the subgroups considered are growth problems, problems with puberty and reproduction, cardiac problems, thyroid dysfunction and cognitive and psychosocial outcomes.

The development group did not consider other important areas, including second malignancy, renal, respiratory or liver dysfunction and late effects involving vision and hearing.

Growth problems

Many survivors of childhood cancer have impaired growth as a result of the disease or its treatment.2-4 Regular assessment should be carried out with the aim of achieving normal growth. Information that includes height, bone age and puberty staging should be plotted onto a growth chart.5

Early advice on healthy eating and exercise is important as obesity can mask abnormal growth.6-8 The guideline also recommends assessment by paediatric dentist to ensure normal dental development.9,10

Problems with puberty and reproduction

It is important to identify early any problems affecting normal progression through puberty. Early referral for pubertal assessment at a specialist centre should be considered.11

Young men who require potentially gonadotoxic treatments may be offered cryopreservation of semen.12-14

Cardiac problems

Early identification, assessment and treatment of cardiac abnormalities is important, particularly in patients who have been treated with anthracyclines or mediastinal irradiation.15,16

Advice on diet, exercise and avoiding smoking or smoking cessation is particularly important in this group of patients.17

The guideline recommends a detailed cardiological assessment for those taking part in competitive sports or contemplating pregnancy.18-20

Thyroid dysfunction

Patients who have undergone radiotherapy to the neck, spine or brain require regular, and usually lifelong, surveillance of thyroid function.21-23 Patients at risk of thyroid nodules or second primary thyroid cancers should seek urgent medical attention if they find lumps in the neck.24

Cognitive and psychosocial outcomes

Healthcare and educational professionals should be aware that the treatment of childhood cancer may have an impact on neurological function 25-26 and on educational and social function in later life.

Regular review of neurological function should form part of normal follow up. Patients should also undergo regular review to identify educational and psychosocial dysfunction and be referred appropriately.27-28

Level of follow up

The recommendations on the type of follow up are stratified into three levels as summarised in Table 1 (below).

Table 1: Possible levels of follow up for patients five or more years from completion of treatment

The guideline emphasises the need for a multidisciplinary team approach to the follow up of these patient groups, to ensure the best possible outcomes.

One member of the team should act as key worker, and the team should have access to other specialist expertise as required. Specialist nurses with appropriate training can make a valuable contribution to patient care.

Primary care is ideally placed to screen and record height and weight regularly and to carry out basic thyroid and cardiac assessment. Practice nurses and health visitors are well equipped to offer advice on healthy diet, exercise and smoking cessation. The guideline recommends shared care management and protocol-led shared recording to ensure good liaison between primary care and specialist centres.

Patient records

These patients are likely to be cared for by different healthcare teams and encounter a range of healthcare professionals during their treatment and follow up. All consultations – including those with opticians and dentists – should be informed by a full medical history.

The guideline suggests that patient-held records may be useful, particularly for patients who move to another area of the country.

Patient information

It is important to emphasise to patients and their families that by attending for regular review many potential problems can be prevented through early detection.

The guideline contains a section on patient information, which includes a reference source for patients and their parents.

SIGN 76. Long term follow up of survivors of childhood cancer can be downloaded free of charge from the SIGN website:

Guidelines in Practice, February 2004, Volume 7(2)
© 2004 MGP Ltd
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