Handling over medical care of adolescents to adult teams safely Mignon McCulloch Red Cross Hospital, University of Cape Town Evelina Children’s Hospital (Guys’…and St Thomas’…and King’s )

Introduction Transition challenges Paediatric and Adult services Developing countries failure of transplanted kidneys due to non-adherence to: – Medication – Follow-up NO further renal replacement ‘1 strike and you’re out’ ‘Crazy’ cut-off at 13years

Transition is defined as….. “……a purposeful, planned movement of adolescents with chronic physical and medical conditions from child centered to adult-oriented healthcare systems” American Society for Adolescent Medicine 1993

“…. A guided educational, therapeutic process, rather than an administrative event” UK DOH 2003

Idealistic Individual Immature Irrational Invincible Immortal Immune Infertile

Graft Survival By Age NAPRTCS 2002

Models of Transition A dedicated follow-up service provided within adult setting without a combined paediatric-adult clinic and with no direct input or continuity from paediatric services A ‘seamless’ clinic which begins in childhood or adolescence and continues into adulthood, with both child and adult professionals providing ongoing care as appropriate. Life-long follow-up within the paediatric setting

Paediatric vs. Adult Care Parent focussed Dependent Younger kids! Personal Bustling & loud Fun Large team Individual focussed Independent Elderly patients Impersonal Quiet and Serious Small Team

Transplant Clinics ECH vs. Guys Adults 80 transplant patients 2 nephrologists in clinic 1 Clinical Nurse Specialist(CNS) Clinic held daily; 10 slots 1000 transplant patients 7 nephrologists & 2 surgeons in clinic 2 CNS & nursing team Clinic with up to 100 appointment slots

“In whatever healthcare setting it is delivered; services need to be appropriate for both chronological age and development attainment” Society of Adolescent Medicine 2003

What Does Successful Transition Need? Young people!! Commitment Planning Resources ‘ ’ ‘Collaborating, health professionals who demonstrate ‘mutual professional respect’ Watson 2006

Original Pathway Encourage increasing autonomy, by seeing nurse and/or doctor alone Individual Discussions about Transfer Teenage Groups Transfer to Adult Services Visit to Adult Unit

Objective Review of Adolescent Clinic at Groote Schuur Hospital(GSH) Support from Red Cross Hospital(RXH) doctors and clinical social worker

Development of Adolescent Transition Service requires: Link person in Adult unit – ‘Champion’ Committed Doctor – remembers what it is like to be a teenager? Nursing staff – Sr ‘Golly’ Social worker + psychologist Commitment from Administrators

Adult units HUGE Paeds Renal Transplants – 44 patients Adult Renal Transplants – 400 patients

Patients seen in last 2 GSH Month per year Nos of pats per clinic

Results of Program Nos of Adolescents transferred GSH19 Nos received re-transplant2 Nos awaiting transplant2 Nos died after transfer2 Nos lost to follow-up0

Deaths at RXH 7 patients in last 5 years died at RXH during adolescent years >13 years of age Not reflected on the Adolescent stats previous slide

RXH Active decision NOT to ‘re-list’ some patients Not transferring those patients Allowing to stay in ‘familiar environment’ during end- stage disease Holding back those deemed ‘not ready’ medically or psychosocially

Psychology input Separate monthly groups at GSH for – Parents/Carers – Adolescents Motivational events – ‘Graduation ‘ lunches – Welcome meetings/tours at Adult unit

Medically Don’t transfer in crisis Making more decisions NOT to transfer Keeping older RXH as limitation of slots on adult side Allocation of organs doesn’t mirror this

Where are we know? Initially aimed at transitioning backlog of older adolescents(18-21year olds) Then proceeding to 16-18year olds Now working with younger groups

Generic Adolescent Workshops Younger group 13 – 15 year olds of all disciplines with chronic implications 68 Parents and patients attended workshop at April 2009 RXH

Topics addressed Pregnancy and Contraceptive advice – Termination of pregnancy – Drugs affecting foetus – AECI’s Recreational drugs and alcohol Crime Non-adherence/compliance/concordance – Do you take your meds ?  how many times per week do you forget?

‘Embarrassing moments’ Group support Medical intervention Cultural beliefs Successful times

What is our Collaboration? Long term approach Named individuals Communication Adult team in paediatric clinic Timing of transfer Paediatric team in adult clinic Young adult services

Conclusions Successful adolescent transition is possible BUT: Requires significant staff input Ideally medically stable at transfer Adolescents/Young Adult Clinic

Real life dilemmas How do you manage if medical and nursing staff think ‘adolescents’ are not useful members of the community as ‘no dependants’? Social worker feels their role is only in securing grants? Administrators insist on transition at 13 years?