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M Graham-Brown UHL Jan 2014

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)

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M Graham-Brown UHL Jan 2014

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  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. 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

  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 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

  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 • 30-45 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

  10. 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

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

  12. Did this version make a difference • Probably!

  13. 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…..

  14. 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

  15. Thanks

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