Transition: Moving to adolescent or adult services

The process of moving from child to adolescent or adult services is called transition. The age at which people transfer from a children’s (paediatric) rheumatology clinic varies a lot and the process is different in different hospitals. In some places, young people first move to an adolescent rheumatology clinic and in others they transfer to adult rheumatology department. Not everyone with arthritis will have the same experiences of transitioning (or moving) from one clinic to another, and sometimes people only have access to adult clinics.

The people we spoke to who were preparing for transition, or who had already moved from children’s services to adolescent or adult services, described different ages when transition took place. Some moved to adolescent or adult services between the ages of 14 and 16, whilst others didn’t move until they were in their 20s. For example, Deni moved to adult services when she was 14, whilst Catherine was still going to adolescent clinic when she was 24.
The transfer could also depend on how flexible doctors could be. Sometimes people had to leave once they reached a certain age. Michelle moved on when she turned 16. But for others it depended on personal circumstances, such as whether or not they had been put on new treatment, how ready they felt, or whether or not they were in fulltime education. Jenna took part in a clinical trial and wouldn’t move to adult services until the trial was over, David Y’s doctor felt he was too poorly to move at 19 so waited until he was older, Chantelle was going to move at 18 but was in the middle of a flare so doctors waited.
Thoughts about moving to adolescent and adult services
Different people felt differently about moving from paediatric to adolescent or adult services. Some didn’t have strong feelings about moving. Jenna hadn’t given the transition much thought, and Tom said he hadn’t been treated by his paediatric team long enough to be too attached.
Some were pleased about the move because they felt they were too old to go to paediatrics. Elizabeth said she was too old to watch Disney DVDs and play with Duplo.

Transferring to an adult clinic at a different hospital could make practicalities of getting to appointments easier. For Sabrina and Jenna the adult hospital was much closer to home than the children’s hospital. Sabrina was pleased that she didn’t have to rely on her dad for a lift to the hospital, whereas Jenna’s mum was happy because it meant Jenna didn’t have to miss so much of school. Jazmin’s mum was “excited” and felt that this meant she was becoming independent. Charlotte Z was happy because the new hospital had an excellent reputation. Being able to make more decisions by yourself was also seen as important to those we talked to.
The thought of moving from paediatrics could be “worrying” and “scary” when people had been in the same clinic for so long and developed emotional bonds with the staff. Some said they would be upset because they had known the health professionals for many years and would miss them. Sometimes people worried about how they would get on with their new doctor or what a new hospital would be like.
It could be just the unknown that concerned people, such as going to a new hospital. David Y pointed out that some people “don’t like change”.  People wondered if they would have different tests or new treatments. They also worried about the new staff not having enough information about a person’s medical history. Bradley had a phobia of needles and didn’t want to have blood tests when he went to his new hospital.
Some parents were also worried. They thought that adult rheumatologists could be less friendly, less personal and more serious or that they would have less time in the clinic. Karen felt that seeing older people with arthritis who had limited movement be “alarming” for young people and a possible reminder that “that’s your future”. Treatment has improved so much over the last 5-10 years that it’s now rare to see young people in wheelchairs because of their arthritis. People also pointed out that in paediatrics they could access treatments quickly and flexibly and worried about possibly longer waiting times in adult services.
Preparing for transition
The people we spoke to described the ways in which rheumatology staff helped prepare them for transition.  Some were given lots of information such as leaflets or staff explained what to expect. People were sometimes taken to their new clinic and introduced to staff that would care for them in the future.
Doctors reassured young people that they would be in good hands when they moved on. Occasionally people saw both their paediatric consultant and their new consultant together for a while. They said this helped introduce the new consultant to their needs. Those young people who were moving to university sometimes had to choose if they would like to transfer to a new hospital in their home town or university town.
One aim of the transition process was to help people become as independent as possible. For example, they were encouraged to come along to appointments by themselves. They were also encouraged to speak up more during appointments and write questions down so they didn’t forget when they saw the doctor alone. Parents could play a role during the transition by encouraging their children to rely on their own initiative and develop confidence to do things independently. Parents participated less and less during the consultations, saw the doctor after their child saw the doctor, or didn’t go in at all. This helped build young people’s confidence to be independent.
Sometimes these changes took months and people were given lots of time to adjust. A few of the people we spoke to didn’t have any transitional period and were thrown “straight into the deep end”. Both young people and parents recommended that young people should have time to plan and prepare for transition rather than “dive straight in”.
After transition
The people who had already transferred to an adolescent or adult rheumatology clinic said lots of positive things. Some were surprised at how friendly health professionals were and realised that there wasn’t anything to be worried about. They sometimes felt that they had more say in treatment options and were pleased with how quickly health professionals got to know them and how arthritis affected them. David Y said his adult rheumatology team “hit the ground running”.
Some of the people we spoke to said that they kept seeing some of the same health professionals after the transition. They were pleased to see some of them but were sad to see others go.
If the young people didn’t feel comfortable with talking about the details of their arthritis in the clinic, their parents could join them. However, people found that going alone to an adolescent or adult clinic meant that the doctor communicated directly with them rather than their parents. Jessica’s mum used to go into the clinic with her after she was transferred. She noticed that, unlike before, the doctor spoke directly to Jessica and made less eye contact with her mum. Sometimes it was hard for parents to “let go”.
Transition helped young people become increasingly independent in managing their conditions. For example, they began to order medications and went to blood tests by themselves. Some wrote down the results so they could remember what was said and pass it on to parents if they wanted to know too.

Last reviewed November 2018.

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