Confirmed transfer of care of adolescents with juvenile idiopathic arthritis (JIA) from a major children’s service to a first adult care provider is suboptimal.

A chart review of 177 patients from the Royal Children’s Hospital in Melbourne found 62.3% were referred to either public or private adult services. Documentation of the transfer of care occurred in 62.3% of referred cases.

Return correspondence was received back from the adult provider in only 49.1% of cases, with no significant difference in the response rate between public and private providers (45% v 53.9%, p=0.38).

The study, published in the Internal Medicine Journal, found confirmed transfer of care was more likely if a ‘backstop appointment’ – a paediatric appointment scheduled intentionally after the estimated date of initial adult review – was offered at RCH (66% vs 30%, p=0.0002).

Of the 43 patients without confirmed transfer of care, 34.9% had recently active disease and 62.8% were still on clinic prescribed DMARDs including biologics.

The study said there was a risk that patients without confirmed successful transfer of care may drop out of follow-up undetected with consequent poor disease outcomes.

“More concerningly still, a significant proportion of these patients had polyarthritis, which is known to be associated with poorer long-term outcomes than other JIA subtypes, with higher rates of severe limitation of function and disability in adulthood,” the study said.

The study suggested one reason for the lack of correspondence may be that trainees in public clinics did not appreciate the importance of confirmation with the referring centre and instead wrote back to the patient’s GP.

Of the patients who were not referred to adult services, most (61.9%) occurred as a result of loss to follow-up in the context of repeated failure to attend appointments or patients electing to withdraw from care.

“Although it is tempting to assume these patients may have had long term inactive disease, in fact 41% had had recently active disease or were on clinic prescribed medication at the time of their last RCH visit.”

The investigators, led by rheumatologist Dr Joachim Tan now at the Queensland Children’s Hospital, said there was an obvious need to implement mechanisms to ensure ongoing care has been established when transitioning JIA patients to adult care.

Their action plan included:

• Universal use of ‘backstop’ appointments for all JIA patients being transferred to adult care.
• Phone review with the patient if a ‘backstop’ appointment is not attended or is cancelled by the patient, and correspondence from the referred adult provider has not been received.
• Phone review with the referred adult provider to determine whether transfer of care has occurred if the patient is unable to be contacted.
• When practical, preferential referral to adult providers that share a common electronic medical record with our centre.