Follow-up after childhood cancer: evaluation of a three-level model

Follow-up for cancer survivors is recommended to detect recurrence; monitor late-effects; record toxicity and provide care and education. We describe our experience with a three-level model developed to guide decisions about intensity and frequency of follow-up [Wallace WHB, Blacklay A, Eiser C, et al. Developing strategies for the long term follow-up of survivors of childhood cancer. BMJ 2001;323:271-274].

One hundred and ninety eight survivors (52% male) recruited over 12-months: (mean age=23.8 years, range=16-39 years; mean time since diagnosis=16.2 years, range 2.4-32.7 years) reported their number of symptoms and late-effects. Information was taken from the medical records to assign each survivor to the appropriate levels by six clinic staff independently.

The survivors were assigned to level 1 (n=8), level 2 (n=97) and level 3 (n=93). There were seven cases of disagreement. Level 3 survivors self-reported more symptoms and late-effects than level 2 survivors.

Coding was relatively simple for experienced clinic staff, although there were some disagreements for the survivors of ALL. The relationship between assigned level and self-reported symptoms and late-effects provides some evidence for validity of the model. We conclude that it is important to maintain flexibility to allow movement between levels for individual patients and that the default should always be to the higher level.