This article reflects the content of a paper delivered at the SIOP/ICCCPO Meeting, Oslo (Norway), 2004

Through the generous support of The Lisa Thaxter Trust a group of nurse researchers in the United Kingdom has recently completed a study on  the impact of cancer and treatment on adolescents.  The specific focus of the study was on cancer-related fatigue.  In order to find out whether the youngsters had experienced this symptom, we decided that we needed to know how they felt they managed their 'normal' day to day activities and, if they identified fatigue as a symptom, to discover if they had developed ways of coping with it. A range of different methods of collecting data were used, including interviews, diaries (both paper and electronic) and discussion groups.  We included adolescents who were currently receiving treatment for cancer (8), those who were in early remission (7) those in late remission (22), and a group who had not had cancer (20).

The adolescents on treatment reported fatigue to be overwhelming.  They perceived it had a significant effect on their physical, psychological and social well-being.  These effects were felt to place an extra burden on them whilst they were striving to achieve normality in their lives.  For example, consider this account by Caroline who is receiving treatment:

Caroline started treatment two months ago and is currently still going to hospital for radiotherapy.  She lives at home and goes to college for just 6 hours a week to do her one A level in Art.  Prior to her cancer, she was doing 4 A levels and went dancing once a week and rode and looked after her horse.  Her treatment and recovery are having a significant effect on the way she is able to lead her life.  However, she does not voice a particular concern about this.  Fatigue for Caroline occurs in both her body and her mind simultaneously.  If her body feels tired then so does her mind.  Activities such as walking the dog, which previously she could do easily, now cause both body tiredness and aching knees.  Fatigue in her mind often came from school work, where she found it difficult to concentrate.  Being with other people, and where there was a lot of chatting and conversation occurring also tires her mentally and physically.

Striving for normality was also a feature of adolescents who had completed treatment.  For adolescents who were experiencing ongoing health problems and worries, fatigue appeared to play a significant role.  For others, fatigue was not a feature of their lives and they identified themselves much more closely with their peer group in the activities and social lives they shared.  Adolescents off treatment varied widely as to how they thought cancer and its treatment had affected their lives.  None of the adolescents reported the debilitating and extreme fatigue that those on treatment described.  In contrast, for adolescents who had not had cancer, whilst extreme levels of tiredness would appear to be a common feature of their lives, they saw it as a normal expression of a busy life.  This did not necessitate a change in lifestyle and was not associated with any ongoing health problem.  Life for these adolescents seemed to be a constant balancing act between school, home life and social activities.

What was most striking in our study was the difficulty adolescents had in separating the symptom i.e. fatigue, from the overall experience of cancer.  Uncertainty and anxiety were featured in many of the adolescents' accounts alongside strategies used to manage symptoms and their cancer experience.  Fatigue was accepted as a consequence of having cancer.  Therefore from our own study and other research from the USA and Europe it would seem to be important that doctors and nurses give information about fatigue to children and adolescents at the time of diagnosis, when they are being prepared for treatment side effects.  At the same time, we would encourage families to seek more information about this symptom from doctors and nurses.  Families might also like to think about noting/recording the experience of fatigue and how it affects their child and the whole family so that the information can be shared with any of the professionals providing ongoing care.  Although adolescents in our study had found ways to cope with the symptom, usually involving taking more rest and sleep, it is still too early for us to be able to describe to families particular ways of effectively managing fatigue.  We have however, made some suggestions of what might help in Table 1: adolescents and parents might like to think about these and share their thoughts with health care professionals they meet.

We need to find ways to help adolescents gain control of their symptoms, to adjust to a cancer diagnosis and be successful in reaching their developmental milestones that will enable them to lead a fulfilling life.  For that reason, further research is required to develop a fuller understanding of cancer-related fatigue and ways in which to help and support adolescents to effectively manage their experiences of this symptom.

Dr Faith Gibson, Institute of Child Health and Great Ormond Street, Hospital for Children, London, UK

Professor Alison Richardson, Hospital NHS Trust, London, UK

Jacqueline Edwards, King's College London, UK

Dr Emma Ream, The John Radcliffe Hospitals NHS Trust, Oxford, UK

Beth Sepion, University of Southampton, UK

Anne Mulhall, Independent Training and Research Consultant, Norfolk, UK

Acknowledgments

Our thanks to The Royal Marsden Hospital NHS Trust, Great Ormond Street Hospital for Children NHS Trust, University College London Hospitals NHS Trust, and Langley Park Schools for Boys and Langley Park School for Girls.

Table 1 What might help?