Caring for adult survivors of childhood cancer : the role of the general practitioner

Since the sixties the survival rate for children with cancer has increased from less than 25% till around 75% nowadays. The increase in survivability of childhood cancer has translated into a growing population of young adult survivors. At the same time it has become clear that the success of cure has not come without cost. Studies estimate that at least two-thirds of adults who survived childhood cancer have had at least one late complication and approximately one-third have had serious or life-threatening complications. Childhood cancer survivors have an excess risk of mortality due to relapse of the primary cancer or therapy-related secondary cancers and late complications, mainly cardiac or pulmonary disease. For a long time, it was common practice to discharge paediatric cancer patients after a disease-free interval of approximately ten years. Young children continued follow-up until they reached adulthood about the age of 18 years. To reduce the morbidity of late effects it is important to detect and treat diseases as early as possible, preferably at a subclinical stage.The scope of late effects has not yet fully been mapped, as the oldest survivors are now between the ages of 30 and 40, and we do not yet know the health risks of the elderly. Therefore, follow-up should be combined with reliable registration and research on late complications and risk factors. For this purpose, survivors of childhood cancer need periodic assessments and information about the health risks, together with lifestyle counselling (for example regarding smoking, alcohol and exercise) to decrease further damage. Nowadays paediatric oncologists world-wide believe that a systematic plan for lifelong screening and surveillance should be offered to all survivors. At present not all adult survivors of childhood cancer get the necessary follow-up. Based upon the assumption that follow-up is required and important, the question arises as to who is best suited to provide this care and where is the best place for follow-up. This thesis deals with the role the general practitioner could play in the long-term follow-up of adult survivors of childhood cancer.

The effect of exercise counselling with feedback from a pedometer on fatigue in adult survivors of childhood cancer:a pilot study

OBJECTIVE: The aim of this study was to evaluate the results of home-based exercise counselling with feedback from a pedometer on fatigue in adult survivors of childhood cancer. PATIENTS: Adult survivors of childhood cancer were recruited from the long-term follow-up clinic of the University Medical Centre Groningen, The Netherlands. A score of 70 mm on a visual analogue scale (scale, 0–100 mm) for fatigue was used as an inclusion criterion. Controls were recruited by the survivors among their healthy siblings or peers. METHODS: During 10 weeks, the counselor encouraged the survivors to change their lifestyle and enhance daily physical activity such as walking, cycling, housekeeping and gardening. As a feedback to their physical activity, the daily number of steps of each survivor was measured by a pedometer and registered using an online step diary at the start of the programme and after 4 and 10 weeks. Fatigue was the primary outcome measure, assessed with the Checklist Individual Strength (CIS) at start (T0), 10 weeks (T10) and 36 weeks (T36). Thirty-three healthy age-matched control persons were asked to complete the CIS. RESULTS: Out of 486 cancer survivors, 453 were interested and were asked to complete the VAS to measure fatigue; 67 out of 254 respondents met the inclusion criteria, 21 refused, 46 were enrolled and eight dropped out during the study. The mean scores on the CIS in the survivors at T0 was 81.42 (SD ± 20.14) and at T10 62.62 (SD ± 20.68), which was a significant improvement (p < 0.0005). At T36, the end of the study, the mean CIS score was 63.67 (SD ± 23.12); this was a significant improvement compared with the mean CIS at the start (p < 0.0005). There was no significant difference in the mean CIS scores of the controls during the follow-up period. CONCLUSION: The stimulation of daily physical activity using exercise counselling and a pedometer over 10 weeks leads to a significant decrease in fatigue in adult survivors of childhood cancer, and this improvement lasts for at least 36 weeks