Handling over medical care of adolescents to adult

teams safelyMignon 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 AgeNAPRTCS

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) 2002-2009

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 years @ GSH

0

2

4

6

8

10

J F M A M J J A S O N D

2008

2009

Month per year

Nos

of

pats

per

clin

ic

Results of Program 2002 - 2009

Nos of Adolescents transferred GSH

19

Nos received re-transplant 2

Nos awaiting transplant 2

Nos died after transfer 2

Nos lost to follow-up 0

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 patients @ 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?