Transitional care pathways for young people with juvenile idiopathic arthritis (JIA) have been done notoriously poorly in the past but practice is now turning around.
Professor Helen Foster, a paediatric rheumatologist from Newcastle University Medicine Malaysia, told the APLAR-ARA meeting the improvement was driven by new guidelines, the availability of resources and evidence that transition could make a big difference to patients.
While transition care was expensive, she said a Dutch study had shown implementation of a clinical transition pathway improved the drop-out-of-care rate at the adult clinic and patient satisfaction.
“There are lots of places that haven’t published their work but my impression is that people are now saying patients are transferring, they are happier, they are ready, they are in a better shape holistically and that they are seeing more of them turning up in the adult clinics.”
She said transition was a lengthy process that should ideally start from as early as 11 years but no later than 14 years with the goal of gradually preparing young people to step up to managing their care and helping parents to step back.
Professor Foster, who led the EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases said age-banded clinics such as 11-14 years and over 14 years were a good idea.
She also said split consultations should be the norm during transition, with the young person seen alone for short periods at each consultation and then gradually increasing the time.
Asking the young person to summarise the consultation for their parents was a tip to encouraging their independence and helping reassure parents, she suggested.
Discussions should also include planning ahead for education and employment along with generic health issues. Disclosure about having a chronic illness was a particular problem for young people.
“They don’t like talking about it. And it’s a good thing that with JIA patients now you often can’t see anything wrong with their joints because they are so wonderfully well treated.”
“Explaining that they are stiff in the morning and need to go to school or work a bit late, and aren’t just skiving, is quite challenging so we have to help them to almost rehearse telling somebody about their illness; that they have good days and bad days.”
She said having a selection of commonly asked questions that young people could select from could encourage discussion on sensitive issues such as sexuality and sexual health.
Non-adherence and no-shows were common in adolescence but should always be followed up, she advised. At the same time, clinicians should always express concern at any risk taking behaviour.
According to Professor Foster, patients who are transfer-ready will be medically stable with good disease control and they will be keen to move on from the paediatric to the adult clinic.