Teamwork is important for the long term follow up needed by those who survive cancer as a child, says Dr Chris Barclay


The recent evidence-based SIGN guideline on the long term follow up of survivors of childhood cancer breaks new ground. In a field of medicine where most experience has been anecdotal, it has pulled back a curtain to reveal an area of new, significant and increasing need in our community.

In the early 1960s, the 5-year survival rate for childhood cancer was just 24%.Thirty years later it had risen to 73%. Improvements for particular cancers are even more dramatic. For acute lymphatic leukaemia the 5-year survival rate rose from 4 to 81%, and for Wilm’s tumour from 29 to 80%.

Five-year survivors have an elevenfold increased risk of death, mainly from recurrence of the primary tumour, but considerable numbers are now surviving to adult life. Survival is no longer the sole aim of therapy; minimising the risk of longterm morbidity is now a priority, too. Much of the morbidity in longterm survivors is related to the treatment modality - surgery, chemotherapy and radiotherapy - for the primary disease.

The practice of medicine is changing rapidly. It is no longer enough to be a good GP to individual patients. GPs now have to organise and deliver care to communities of patients as well.This strategic approach requires GPs to work in concert with a range of other disciplines.

The guideline, which is aimed at primary care and specialist teams, emphasises the need for a multidisciplinary approach to follow up.

It identifies five areas where a more coordinated approach is required.

  • Growth: Cranial and spinal irradiation as well as some forms of chemotherapy can compromise final height. Regular height measurement is important and should include sitting height in those who have undergone craniospinal irradiation. Deficiencies in growth hormone can be corrected in some cases.
  • Puberty and fertility: Gonadal irradiation can obviously affect puberty in both sexes. The guideline discusses matters relating to male and female fertility problems, including sperm collection before treatment.
  • Cardiac damage: Mediastinal irradiation increases the risk of cardiac disease in later life, as do anthracycline anticancer agents such as daunorubicin. SIGN recommends regular echocardiographic screening for certain survivors.
  • Thyroid function: Irradiation of the head and neck can lead to hypothyroidism in adult survivors and in some cases thyroid cancer.
  • Neurodevelopmental and psychosocial issues: Surgery and cranial irradiation can cause structural brain damage.The disease process and its treatments can also adversely affect emotional and psychological wellbeing, but these effects can be ameliorated with appropriate support and therapy.

Individual GPs and practices see too few cases of survivors of childhood cancer to be effective and skilled in this specialist area ­ there is no Read code for childhood cancer and I can think of only one case at my practice currently. Therefore it is vital to improve awareness and to work as part of a multidisciplinary team. Specialist nurses functioning at PCT level or above would seem best placed to organise and coordinate a service for these patients.

The guideline suggests that patientheld records would be useful, especially when survivors move to another area. SIGN grades the level of follow up required, and this ranges from intermittent telephone contact to detailed annual review, and emphasises that dedicated survivor follow up should be for life.

Guidelines in Practice, January 2004, Volume 7(1)
© 2003 MGP Ltd
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