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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.

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Presentation on theme: "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."— Presentation transcript:

1 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

2 Whats 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

3 The perceived problem(S) ADOLESCENCE. – Experimentation – Rebellion – Independence – Non-adherence of immunosuppression TRANSFER OF CARE. – Disconnect – Lack of cohesion – Trust in adult clinicians

4 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

5 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 Childrens 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

6 Aims of the integrated service Reduce non-adherence with immunosuppression Improve engagement with clinical services Reduce rates of late rejection Improve allograft survival

7 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 minute consultation appointments Seen alone first (without parents) to promote autonomy, then family invited in to discuss plans, future etc.

8 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…

9 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

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11 Transfer to adult care Varies between individuals, but related to – Educational stage – Employment – Social development Some remain in young adult clinic until late 20s 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

12 Did this version make a difference Reduce non-adherence with immunosuppression ? Improve engagement with clinical services ? Reduce rates of late rejection ? Improve allograft survival ?

13 Did this version make a difference Probably!

14 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…..

15 Not really a criticism Historical control group – cant 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

16 Thanks


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