Support during transition to adult care takes time to show its benefits

An appointment-management strategy for young people with type 1 diabetes transitioning to adult care appears to increase their engagement with specialist services, particularly in the second year post-transition.

The Australian study published in The Lancet Child & Adolescent Health suggests young people manage the first year of the transition relatively well irrespective of the level of support.

During the first year of transition, clinic attendance was similar in young people receiving standard care compared to those receiving a more personalised transition including additional resources, telephone and SMS reminders and automatic rebooking of missed appointments.

However clinic attendance dropped off in the second 12 months from 2.5 per year for those receiving appointment management to 1.4 for those on standard care.

Disengagement from the service in the first year occurred in 6% of supported patients compared to 11% receiving standard care. However disengagement skyrocketed to 49% during the second year for patients on standard care.

Co-author Dr Mary White, a paediatric endocrinologist at Monash Children’s Hospital, said some practical issues might explain the lag time for the observed effect.

 She told the limbic patients were frequently still attending with their parents during the first year of transition to adult care before the ‘real world’ kicked in.

“There are issues around real life such as the inability, reluctance or fear around rescheduling work or university commitments. In trying to fit everything in, diabetes takes a back step.”

Dr White said paediatric services could help prepare patients for transition by starting discussions early and giving them time to think about logistical issues such as which service would be the most accessible for them without parental support.

She said feedback from young people new to adult services was that they were frustrated with seeing different doctors at each clinic and having to repeat their story.

“Engagement is really important to these young people. They actually do want a relationship with the doctor, they want a rapport and they want consistency where possible,” she said.

“In discussing different care models we need to be explaining that they might see different doctors in public hospitals. Probably young people don’t appreciate that at the time of transition.”

Dr White said other basic transition strategies included ensuring pediatric services supplied the patient’s contact details in referral letters to adult clinics, ‘so if a young person doesn’t turn up for their appointment, they can be contacted’.

Similarly, young people needed to know who to call at the adult service as issues arised.

“The early 20s is when a lot of deterioration happens, complications occur and when the drop out rate is most important,” she said.

She added there was currently no consensus on best practice regarding transition and the role of transition coordinators.

“While we didn’t look at it, other studies have used educators and I do wonder if someone with clinical insight would help. There’s a little bit more to it than just ‘your appointment is next Tuesday’.”

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