Long term follow up of survivors of childhood cancer
Section 2: Long term follow up

2.1 Timescale

The evidence base to guide the establishment of a structure for long term clinical follow up is incomplete and current best practice is that all survivors of childhood cancer should be followed up for life. With increasing survival rates there is an urgent need for further research into therapy-specific follow up and for the development of evidence based, long term follow up strategies. The British Childhood Cancer Survivor Study will investigate the risks of particular adverse health outcomes occurring amongst survivors and their offspring and relate outcomes to treatment modalities. This study may answer some of these questions when it reports.

2.2 Shared care

There is no evidence for the optimum setting for following up long term survivors. It is likely that both primary and secondary care services will be involved to a different extent depending on the individual patient. It is therefore essential for the patients, their carers and all healthcare professionals who may come in contact with them to be aware of the diagnosis and what treatment they have received, in order to be vigilant for signs of potential problems.

2.3 Personnel

It may not be appropriate for adult cancer specialists, who may lack the specific training required, to follow up childhood cancer survivors.

Anticipation and monitoring of late adverse effects to optimise prevention and treatment outcomes requires multidisciplinary expertise (see Table 2 for a list of main team members). The multidisciplinary team will need access to other specialist expertise as required, for example, gynaecology, cardiology, allied healthcare professionals and others. There is an important role for a designated key worker for each patient to coordinate care. Depending upon the needs of the individual patient an appropriate key worker should be drawn from the multidisciplinary team. With appropriate training, specialist nurses can make a significant contribution to the care of these patients.

Table 2: Multidisciplinary follow up team (which should include one member as the key worker)



2.4 Follow up strategies

The degree and nature of long term morbidity risk will depend on the site of the underlying malignancy, the type and intensity of treatment and age at treatment. An appropriate follow up strategy will depend on the nature of the patient group and treatment. Three levels of follow up are described, and are summarised in Table 3.

2.4.1 LEVEL 1 FOLLOW UP

At one end of the scale, there are survivors for whom the benefit of clinical follow up is not established and for whom annual or even two-yearly postal or telephone contact may be all that is necessary in order to determine whether there have been any adverse health consequences and to ask about quality of life issues.

2.4.2 LEVEL 2 FOLLOW UP

For the majority of patients on current protocols, the nature and intensity of follow up is less easily determined. Nurse- or primary care-led follow up on an annual basis may often be appropriate although this may miss some individual problems. For example level 2 contact may not detect a child who, as a consequence of low-dose cranial irradiation, develops an early puberty, becomes growth hormone deficient and has a reduced late pubertal growth spurt, in time to intervene.

2.4.3 LEVEL 3 FOLLOW UP

At the other end of the scale, there are patients who have received radiotherapy (other than low- dose cranial irradiation less than or equal to 24 Gy), bone marrow transplantation, or megatherapy. They should be seen in a medically supervised long term follow up clinic three to four times a year until final height is achieved and at least annually thereafter.

Table 3: Possible levels of follow up for patients five or more years from completion of treatment

* with appropriate training protocols

2.5 Second cancers in Hodgkin’s disease

Second cancer is the leading cause of death in long term survivors of Hodgkin’s disease, with exceptionally high risks of breast cancer among women treated at a young age.145 Breast cancer risk increases with increasing radiation dose up to at least 40 Gy. A radiation dose of 4 Gy or more delivered to the breast was associated in one study with a 3.2-fold (95% CI 1.4-8.2) excess risk. The risk increased to eight fold (95% CI 2.6-26.4) with a dose of more than 40 Gy.146 Young age at treatment has a major effect on risk of second malignancy after Hodgkin’s disease.147 Although absolute excess risks are greater for older patients, relative risks of several important malignancies are much greater for patients who are treated when young. Evidence level 2+

Following advice from the National Cancer Research Institute (NCRI), a UK-wide patient notification exercise is being planned and co-ordinated across the four UK Departments of Health to inform individual patients of their increased risk of breast cancer following supradiaphragmatic radiotherapy for Hodgkin’s Disease. These women will be contacted to inform them of their increased risk and to invite them to attend a consultation session to discuss follow up arrangements.

2.6 Conclusions

There is an increasing evidence base of mainly retrospective studies that underpins decisions concerning the clinical follow up of the long term survivor. There is a need for prospective evaluation of new treatments. Information to guide and inform the follow up of the survivors of childhood cancer will come from national, population-based cohort studies, large multicentre clinical studies, and randomised clinical trials which are designed to evaluate both survival and long term toxicities of alternative treatment strategies. As knowledge accumulates the level of clinical surveillance should more appropriately match clinical need.

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