This summary is mostly from the COG Survivorship Guidelines here.
Survivorship care has become increasingly important with the increased survival seen in paediatric cancer treatment. 5 year survival is now 80%. About 2/3rds of survivors suffer late effects; 1/3rd of survivors have late effects that seriously impact or threaten their life. It is therefore essential to provide ongoing follow up for these patients to allow early detection and management of these late effects.
Role of Survivorship Care
- Detection and management of late effects
- Education of survivors
- Referrals to appropriate specialists
- Encourage preventative health measures
- Psychosocial support of patient and family
- Transition to adult health care
Types of Survivorship Care
Cancer Care Centre
The patient may remain with the cancer centre that provided their original treatment, either in long term follow up with their treating oncologist/s or within a specialised late effects clinic. Although patients may feel more comfortable with their original oncologist, there may be too heavy a focus on detection of recurrence and less on late effect management and health promotion. Alternatively, patients may be referred to an adult oncologist once they reach adulthood. The downside to ongoing follow up in the cancer care centre is that it may promote the 'illness' aspect of the patient rather than 'wellness'.
Care is shared between the oncologist (for detection of recurrence and management of late effects) and the GP (for health promotion).
GPs provide a less intimidating environment for the patient, but it is important that the GP is in close contact with the paediatric oncology service so that information regarding recurrence risks, late effects and other issues can be communicated freely and the GP is not left to manage a highly complicated patient alone.
Two important transitions occur in the care of the paediatric oncology patient:
- Transition from acute care to survivorship care
- Transition from paediatric care to adult care
Both of these transitions can be negative if there is inappropriate preparation for the patient. Barriers to the first transition include lack of long term follow up clinics and patient's desire not to be followed up for ever. Particularly in Australia, patients often have to travel long distances from rural communities to attend late effects clinics in the capitals. These can be overcome by providing adequate financial support to families who are required to travel, or alternatively by transitioning some of the care to local providers, or by arranging outreach clinics in regional areas.