Advice to help 'child survivors'

THE RCPE said continuity of follow-up treatment was vital for young people

New guidance on how to treat the "growing number" of young people surviving childhood diseases has been issued to doctors across Scotland.

The Royal College of Physicians of Edinburgh (RCPE) said Think Transition was designed to bridge the gap between paediatric and adult health services.

It calls for "transition co-ordinators" to be appointed to assist the process.

There are about 2,500 childhood cancer survivors in Scotland and more adults than children with cystic fibrosis.

The RCPE said the guidance was needed because developments in medicine have resulted in increasing numbers of adult survivors of childhood diseases.

It said the five-year survival rate for children with cancer was now about 75%.

But the long-term effects of the disease include infertility, heart and kidney disease.

We must recognise that adolescents have their own particular difficulties and needs Professor Chris Kelnar RCPE

The college said an estimated 95% of individuals with cystic fibrosis now lived beyond their 25th birthday, with many surviving well into their 30s.

In light of the growing number of survivors, Scottish hospitals should develop "a policy setting out the principles of transition from paediatric to adult health care", the document said.

It called for each hospital to consider appointing a transition co-ordinator and said the process should address not only health problems but also the effects of illness on young people's education and employment opportunities.

The guidance also said extra support was vital during the transition period as young people become responsible for the self-management of their condition.

Professor Chris Kelnar, from the RCPE, said: "Targeted health care provision for young people has historically been poor, with a tendency to view this as a simple transfer of responsibility from paediatric to adult clinics and a tendency by the health service to view young people as mini-adults.

"This is no longer acceptable and we must recognise that adolescents have their own particular difficulties and needs.

"Similarly, the transition from paediatric to adult clinics must not be seen as a single act, but as an ongoing process which is planned and reviewed and in which young people are fully involved."

'Take away fear'

The guidance covers issues such as when to discuss fertility with young people, the organisation of transition services in remote and rural areas and the importance of giving youths the opportunity to see clinicians without their parents being present.

The RCPE said the views of young people "heavily informed" the document, as well as evidence gained over the past decade.

Cara Doran, from the Cystic Fibrosis Trust, was a contributor to the guidance.

She said: "Transition is such a difficult time for young people - as they have so much going on in their lives with school and exams, part-time jobs, thinking of the future, peer groups and social pressures - that dealing with the responsibility of managing their own condition in an adult setting can be very daunting.

"However, if transition services are organised and structured well over a period of time, everyone involved in the process, especially the young person, should move on to the adult service feeling confident and knowledgeable about who to speak to.

"They should also know what to expect and take away any fear they may have about the whole process."