Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure PN Harden, BMJ June 2012 M Graham-Brown UHL Jan 2014

What’s the problem?

• • ESRD is rare in paediatrics (9-50 ppm) Transplantation is the treatment of choice, as in addition to being the best ‘treatment’ for renal failure, it restores growth and pubertal development in children • >80% of young adults transferred to adult services have a functioning renal transplant • BUT up 35% of these patients will have lost their transplant 36 months after transferring to adult services

The perceived problem(S)

• • ADOLESCENCE. – Experimentation – Rebellion – Independence – Non-adherence of immunosuppression TRANSFER OF CARE.

– Disconnect – Lack of cohesion – Trust in adult clinicians

A recognised problem?

• • • Yes Joint guidelines have been developed on integration of paediatric and adult services by RCP and RCPaeds fro services across specialties. The recommend: – Increased integration – Specific regional young adult services Does it work? – Little evidence

The ‘history’ of this initiative

• Author (PN Harden) was initially an adult consultant renal physician in Birmingham and was involved in setting up an integrated adult/paediatric clinic with Birmingham Children’s in 1999 • Then moved to take up a Consultant post in Oxford (2002) and no transition service existed. Patients went straight into an adult clinic with 20 minute appointment slot • Set up a version of the current integrated service in 2006, and it has evolved ever since

Aims of the ‘integrated’ service

• • • • Reduce non-adherence with immunosuppression Improve engagement with clinical services Reduce rates of late rejection Improve allograft survival

First stage integration

• • • • Pathway starts when patients reach 15 years of age Patients aged 15 to 18 seen at the paediatric centre by a team including: – Paeds nephrologist – Adult nephrologist – Paediatric renal transplant nurse specialist – Adult transplant nurse specialist 30-45 minute consultation appointments Seen alone first (without parents) to promote autonomy, then family invited in to discuss plans, future etc.

Second stage – first incarnation

• • • Dedicated ‘young adult clinic’ introduced alongside this in 2006 in the adult outpatient Median age for patients 22 (16-28) 50% were transfers from paediatric services and 50% were new presenters as young adults • • Only partially successful at achieving initial objectives – put down to limited peer interaction and the hospital environment.

So…

Second stage – second incarnation

• • • • Dec 2008 the clinic moved into a student college and sports centre, and was held every 6 weeks Aim was to create a youth club environment to improve peer interaction Appointed a youth worker (voluntary initially then part time paid employment) A range of activities

Transfer to adult care

• • Varies between individuals, but related to – Educational stage – – Employment Social development Some remain in ‘young adult’ clinic until late 20’s • Author claims – cost neutral as was previously provided in multiple adult existing clinics. Premises and facilities were donated pro bono and peer support activities paid for by local fund raising

Did this version make a difference

• • • • Reduce non-adherence with immunosuppression ?

Improve engagement with clinical services ?

Reduce rates of late rejection ?

Improve allograft survival ?

Did this version make a difference

• Probably!

Take home messages

• • • • • Need to start transition early Recognition that development of the adolescent brain extends well beyond 20 (sometimes ?often!) Gradual transfer of care responsibility from parents to patient – individually managed and still a difficult time but probably beyond the scope of a single nephrologist in a ‘normal’ adult clinic Youth worker appeared to be pivotal Text messages and social networking sites…..

Not really a criticism

• • • Historical control group – can’t guarantee no other changes (although immunosuppressive practices did not change) Small numbers – not really the point though, as there are only tiny numbers!

Late rejection and acute rejection episodes in historical group were identified via electronic records – not 100% certain (author agrees), BUT death and graft loss are clear end-points that are easy to look at retrospectively

Thanks