Long-Term Follow-up

Christine Eiser

CR-UK Child and Family Research Group, Sheffield.  England

Paper presented at the ICCCPO Conference, Barretstown, Ireland  (Oct. 2003)

 

Being asked to talk about long-term effects of childhood cancer raises a number of conflicting emotions. On the one hand, it is an indication of the success associated with treatment that we are now able to ask questions about the long-term impact. On the other hand, the disappointing thing is that the long-term effects identified are inevitably associated with compromised quality of life (QOL). Until such a time when it is possible to treat childhood cancer without any adverse consequences, it is essential to identify the kind of late-effects that are likely to occur. In this way, families and children can be prepared for the future, and that knowledge may in itself result in a reduced impact.

I want to begin by echoing some of the things that Mike Stevens has said. It is especially daunting to talk to an audience like you. I recognise that as parents you have much greater experience in looking after a child with cancer than I or any other researchers can ever have. For that reason, I am really pleased to have the opportunity to talk to you, because it is vital that research answers the kind of questions that you think are important. Research has to be judged by the users. In practice I work in a university department and my work tends to be judged in terms of published papers. For myself, I would like the work to be seen to be of value to children, parents, teachers and everyone else involved in looking after these children.

I was asked to talk about the long-term or late effects of cancer and its treatment. Mike has already described some of the physical effects that can follow from specific treatments. I am going to describe some of the work we have done looking at the more educational and psychological late-effects. I would like to acknowledge the contribution of Cancer Research UK to this, as they have funded this work for the last 10 years. The goals of treatment are to achieve a healthy well functioning individual, and that means that it is important from diagnosis to work toward realising children’s potential.

Having said all of that, it is very natural that parents should worry about their child’s general development. We hear a lot about how experiences during childhood have implications for functioning in later life. For example, it is well established that children who live in deprived circumstances grow up with fewer educational achievements as well as social skills. Certainly children treated for cancer have many disadvantages. They experience aggressive treatment, multiple hospital appointments, needles and other procedures. School absences are likely to have negative implications both for academic achievement and social relationships. If a child is away from school for any length of time, they miss out on making friends, and can often feel “different“ and “left out“. Although it is obvious that these children potentially experience many problems and disadvantages, they are usually very young on diagnosis, and for that reason we can hope that they forget about many aspects of treatment.

As part of our work, we have talked to lots of parents about their children, asking their views about the effects of treatments. Parents describe their children in the same way as any parent describes their child. They can be loveable, adorable, but also a pain in the neck. What parents of a child with cancer also say is that these children become “old before their time“, “like a little old man“, “went into hospital a child and came out a man“. It is often said that children get on less well with other children their age but better with adults, they lack confidence, they forget things, but also that they are very caring.

You may feel that some of these descriptions fit your own child, but there is huge variability and it is not possible to describe any single way in which children react. One of the big difficulties for everyone is deciding how far any problem is related to cancer or just part of normal growing up.

For a number of reasons it is normally recommended that children treated for cancer should be followed up after the end of treatment. Follow-up is important for doctors because it enables them to link late-effects with treatment type, so that new treatments can be devised that reduce the probability of late-effects. In addition, information from follow-up clinics can be used to provide information for future families, and for the individual patient they can be useful as sources of information.

Whatever the merits of follow-up, there is a need for balance. Follow up can increase anxiety. As new research becomes available, families can be confronted with distressing information, suggesting that treatments the child received, although vital at the time, have subsequently been shown to be linked with late-effects. An example is the now established link between anthracyclines and cardiac toxicity. Individuals have a right to know about research of this kind, but it is rare that they are able to change their risk as a result of the information. Preoccupation with possible late effects can minimise involvement in normal activities. This is exactly what is not wanted.

Mike has summarised many of the common late-effects in his own talk and so I am not going to discuss the physical problems again.

Instead I want to focus on what is known about the effects of cancer treatment on Learning and employment and social skills.

Learning and Employment

I don’t need to tell you that children typically have a lot of time off school, especially in the year after diagnosis. There are lots of reasons for this, but infections, hospital appointments, and just feeling tired are the most common. Sometimes, families become so fearful that the child may get an infection that they keep them off school just in case. Inevitably, school absence has a big impact on school work and eventually on exam success.

If you compare a group of children treated for cancer with others of a similar age, you generally find that they have lower IQ scores and achievements like reading and arithmetic. The extent of the problem or the risks of underachievement is greater for those treated with brain irradiation, and for those who were younger on diagnosis. Disappointingly, children’s scores can decrease with time since diagnosis. This means that they drop behind following diagnosis but they do not catch up after treatment ends.

Almost all children with cancer are therefore at risk in terms of their education, and need a degree of special help to succeed in the school system. It has been suggested that almost 50% of those treated for a brain tumour have special educational needs.

There are of course implications for work and employment. Children treated for cancer are more likely to be unemployed than their brothers or sisters, and again those treated with cranial irradiation face special difficulties.

In some of our own work, we have shown that the experience of cancer does not only affect the likelihood of employment, but also affects an individual’s choice of work. We studied a group of survivors who had previously been treated for a bone tumour and asked them how their experiences had affected their choice of work. Ten said it had made no difference. These survivors were often in office based work, involving little physical movement. A further 14 felt their opportunities were restricted. These largely included survivors in manual occupations who felt that their inability to stand or reduced flexibility restricted what they could do. For some these restrictions were on-going. Others anticipated restrictions in the future. For example, one young man was a plumber. Although he was managing the work at the time, he reported that it was hard manual work and he did not expect to be able to keep it up indefinitely. A further eight survivors reported that their illness experience had directed their choice of work. Through their own experience and watching others, they had all decided to go into the “caring“ professions. They were interested in teaching, looking after people with disabilities or training as nurse or doctor. It was not a “good thing“ that they had had cancer, but the experience could be turned to advantage.

The second point I want to make is the way cancer can affect an individual’s social and emotional life and experience. I reported in the beginning that many parents describe the difficulties their child has relating to other children. School absence, maybe looking different as a result of radiotherapy, can all contribute to children having difficulties making friends.

In addition, there is now some evidence to suggest that a small proportion of children and their parents experience post traumatic stress disorder as a consequence of the disease and treatment. This can take the form of re-experiencing treatment, intrusive thoughts, and extreme anxiety about relapse. Approximately 12% of children and 15% of parents experience PTSD. 

It is one thing to describe these consequences of treatment, it is quite another to determine exactly the cause. Difficulties can arise as a direct result of treatment. For example, it does seem clear that many learning problems are a direct consequence of cranial irradiation. But it seems likely that many other causes are involved because it is not the case that all children treated in the same way have the same problems. It is possible therefore that many factors interact with treatment variables to determine the final outcome for any individual child. The reactions of family, friends and teachers are thought to be highly influential. For this reason I want to consider what can be done.

As far as education is concerned, we have to acknowledge that schools have limited resources. They may simply not be able to give the child the kind of individual teaching that would be required to overcome past disadvantage. At the same time, teachers may not have the relevant knowledge. Knowing how to relate to a child who has cancer is not covered in standard teacher training programmes. Like many other people, teachers’ knowledge of cancer is often very limited and so they rely on what they know about other illnesses. They know that for the most part children can become ill with a cold or chicken pox, but fairly quickly they are back to normal. They do not understand so well that the child can have cancer but seem perfectly well, or that it is necessary to continue with hospital appointments for a number of years. For this reason, many teachers may initially be very sympathetic but they lose patience and sympathy with time.

Partly in response to this, we are in the process of writing an information leaflet for teachers. The aim is partly to increase general knowledge and dispel some of the myths associated with childhood cancer. We hope also that greater knowledge will promote greater understanding and empathy.

Undoubtedly children need regular assessments throughout treatment. We do know that children can continue to experience learning problems long after completion of treatment. Parents therefore need to be proactive. It can be hard to get the kind of educational support that the child needs. From this point of view, it may be valuable for parents to share their experiences, and maybe ICCCPO could offer a general information service about this.

Implications

The goals of treatment are to maximise the chances that the child can experience a “normal life“, and achievement of this involves collaboration of a range of professionals as well as family and friends. School is very important for children because it is where they learn, not only to read and write but also how to relate to others, and where they make friends. Minimising school absences has to be essential. In addition, teachers need to feel part of the “team“ and this means they need information, not only ion diagnosis but throughout treatment. Communication is vital both from the family but also from the hospital.

The message from this talk is therefore that we do need to be aware of how treatment can affect the child’s general development. Diagnosis of cancer does not necessarily mean that children will inevitably experience learning and social difficulties, or fail to get satisfying work as adults. However, it does mean that it is more difficult for them than otherwise, and for this reason holistic care needs to include recognition of this, both in the early days of treatment, as well as in the longer term.

 

Christine Eiser

CR-UK Child and Family Research Group,

University of Sheffield. Sheffield, S10 2TP.  England