Follow-up of children who survive cancer
Authors: Meriel Jenney, Gill Levitt
Journal: BMJ (2008)

More than three quarters of children with cancer survive into adulthood, but cure is not the end of their journey. At least 60% have substantial morbidities as a result of their curative treatment. Most adults who survive cancer are discharged from active follow-up at five years, but historically children have been followed up for life; this is becoming unsustainable. A review published in the BMJ more than five years ago explored strategies for follow-up of children who have survived cancer.1 Has anything changed since then?

Two large epidemiological studies—one in the United States and the other in the United Kingdom—have since been published.2 3 More than 10 000 survivors in 26 centres participated in the US study, which found that 62% of survivors have some late effects of treatment (common terminology criteria for adverse events (version 3) grade 1-5), with 27% having severe or life threatening conditions (grade 3-5).4 Data from the UK study of more than 10 000 survivors have just been collected and will be an important addition because the study is population based rather than treatment centre based. Although these studies are limited by the data being collected from subjective patient questionnaires, the results are supported by a recent study.5

It is difficult to predict future healthcare needs from the results of these studies because the treatments given to the participants differ from those used today. For example, many of the late effects seen in these studies were caused by radiotherapy. Fortunately, this form of treatment is now used less frequently (for example, in leukaemia where universal prophylactic cranial irradiation is no longer used). Modern techniques are also more precise, which reduces the exposure of normal tissue to radiation. At the same time, the increased use of chemotherapy may lead to a new pattern of late effects. As new late effects are identified, a mechanism must be in place to recall patients when intervention is necessary. For example, all women who have had radiotherapy for Hodgkin’s lymphoma in the UK must be actively identified and screened for breast cancer.6

So how can a service be developed for this growing and diverse group of patients? The UK government has recently launched a new initiative that explores methods of follow-up for (adult) survivors of cancer.7 Also, the National Institute for Health and Clinical Excellence has recently published guidelines on improving outcomes in children and young people with cancer, which identified several important key points.8

The first is the need for information. A summary of the surgery, chemotherapy, and radiotherapy received—which is kept by the patient but can also be provided to the primary healthcare team—is key to understanding the late effects of treatment. The second is the need for a specialist multidisciplinary team with expertise in the late effects of treatment. This team might include an endocrinologist, psychologist, and specialist nurse. The third is the need for a key worker—who can be immediately accessed at any time—to be allocated to each patient. The key worker would be part of the multidisciplinary team, but the individual may change as the patient’s needs change over time.

The move towards risk stratification of patients proposed in the previous review published in the BMJ remains appropriate but has not yet been universally implemented. Patients who are at high risk of late effects—for example, those who have received cranial radiotherapy, anthracyclines, or a bone marrow transplant—will require ongoing observation by skilled clinicians with an interest in the specific problems that these patients face. However, some patients may not need this service and other models for alternative follow-up have been proposed. For patients who are at low risk of late effects, a succinct accessible summary of the patient’s previous treatment with a plan for any necessary investigations and likely late effects could be the solution. This could be managed by primary care doctors, providing they have access to expertise at the treatment centre. Other patients who may need closer surveillance may benefit from ongoing contact with a specialist nurse who could refer them back to the multidisciplinary team if necessary. Only those with the highest risk of late effects should probably be brought back regularly to the clinic.

These models could also be extended to adults who have survived cancer, but further research is required to identify the extent of the problem, the need for support of both physical and psychological needs, and indeed the views of survivors, about which little is known.9 10

Although many patients will benefit from ongoing follow-up others must be allowed to move on—to leave the clinical setting and put the experience of cancer behind them. If we keep calling patients back to the clinic some may never believe they have been cured.