1. National Hospital for Neurology and Neurosurgery
An introduction to transition: what to expect and the differences between paediatric and adult care
Robin Lachmann
National Hospital for Neurology and Neurosurgery
University College London Hospitals

2. Adolescence: a time of transition
Adolescence describes the teenage years between 13 and 19 and can be considered the transitional stage from childhood to adulthood. However, the physical and psychological changes that occur in adolescence can start earlier, during the preteen or "tween" years (ages 9 through 12). Adolescence can be a time of both disorientation and discovery. The transitional period can bring up issues of independence and self-identity; many adolescents and their peers face tough choices regarding schoolwork, sexuality, drugs, alcohol, and social life. Peer groups, romantic interests, and external appearance tend to naturally increase in importance for some time during a teen's journey toward adulthood.

3. What is transition in healthcare?
“purposeful, planned process that addresses the
medical, psychosocial and educational/vocational
needs of adolescents and young adults with
chronic physical and medical conditions as they
move from child-centred to adult-oriented health
care systems.”
Blum RW, J Adol Health 1993:14

4. Paediatric Services
Transition is the process which prepares the patient/family for the changes of transfer
Adult Services

5. Adults aren’t big children
Why do it?
Optimal health for the young person
Allow them to take on responsibility for their own health
Maintain long-term engagement with health services
Adults aren’t big children

6. How to do it: Key elements of transition policy
Identification of adult centre and consultant
An early start
A written transition policy
A flexible policy on timing of events
An education programme
Opportunities for the young person to meet the adult team

7. Barriers to Transition
Clinicians

8. The Paediatrician’s View
The Physician’s View
Michael Rosen, Helen Oxenbury
Tove Jansson

9. Barriers to Transition
Clinicians
Patients

10. Adolescence
“I would that there were no age between ten and three and twenty or that youth would sleep out the rest; for there is nothing in the inbetween but getting wenches with child, wronging the ancientry, stealing, fighting”
William Shakespeare, The Winter’s Tale
Give a girl social media and she can be just as bad!

11. Young people face plenty of challenges when preparing for adult life
Young people face plenty of challenges when preparing for adult life. For the 40,000 children and young people with complex physical health needs, there are many additional hurdles. In many cases, the health needs of these young people will have been met by the same people who have looked after them for as long as they can remember. However, one of the changes as they reach adulthood is the transfer to an adult environment where they may need to consult several different health teams, therapy teams, and adult social care services.

12. Barriers to Transition
Clinicians
Patients
Parents

13. Parents Impact of transition greater on parents than young people
Geerts E et al 2008;Moons P 2009
Discrepancies re: “right age” and perceived importance of transitional issues between health professionals and parents
Geenen SJ, 2003
A third of health professionals reported parental difficulties during transition
Shaw KL, 2004
Overprotection
Durst CL, 2001; Shaw KL, 2004;

14. Experiences of patients with cerebral palsy and their parents transitioning
Journal of Pediatric Rehabilitation Medicine 7 (2014) 17–31

15. Barriers to Transition
Clinicians
Patients
Parents
Who to transition to?

17. Aims and objectives of service
Aims of Specialised IMD centres
The service aims to identify and diagnose patients who are suspected of having an IMD, to improve life expectancy and quality of life for adults affected by one of the IMDs
Objectives of specialised IMD centres
The adult IMD Centre will:
• provide 24/7 access to clinical advice in conjunction with other adult and paediatric centres in an agreed service provider network
• provide high-quality clinical expertise in accordance with national policy and guidance where available or in agreement with accepted clinical practice to:
• provide timely diagnosis with appropriate counselling and psychological support to the patient and family/carers
• provide dedicated IMD inpatient and outpatient facilities
• provide high quality proactive diet and/or drug treatment and care
• agree and monitor compliance of care pathways and treatment protocols (elective and emergency)
• ensure smooth transition from paediatric to adult care
• ensure equity of access to services for the IMD population
• provide in-house training and education for IMD physicians completing Royal College of Physicians and Royal College of Pathology metabolic training programme
• provide expert advice and education to primary, secondary1 and tertiary care provider units under agreed shared care arrangements where clinically appropriate, and to professionals of other specialised services, e.g. nephrology, cardiology, neurology, linked to IMD conditions

18. Staffing of Adult IMD Service
At least 2 wte specialised IMD physicians
At least 1 wte Senior Specialist IMD dietitian supported by a dietetic team capable of delivering the service
At least 1 wte Specialist IMD nurse supported by a nursing team capable of delivering the service
Therapists, including physiotherapist, occupational therapist and clinical psychologist
A named pharmacist
A unit secretary responsible for triaging telephone enquiries and correspondence
Appropriate administrative and clerical support for the proper management of the service

19. Not so far to go

20. Inherited Metabolic Disease: NHNN Patients under active follow-up
Apr 2014
c.93 different disorders
1300 patients

21. Where have all the patients gone?
MCADD
PKU
Incidence c. 1/10,000
Patients attending our clinic - 10
Incidence c. 1/10,000
Patients attending our clinic - 300
Where have all the patients gone?

22. Currently adults with MCADD are rare
NBS means that in 25 years time adults with MCADD will be much commoner

23. What is Transition about? Taking responsibility

24. Shared Leadership Model for Transition to Self-Management in Medical Care
Receives care
Participates
Manager
Supervisor
Patient
Provides care
Manager
Supervisor
Consultant
Parent
Healthcare professional
Major responsibility
Major responsibility
Support
Consultant
Resource
Age
(Kieckhefer GM & Trahms CM, 2000)

25. At what age should the transition process start?
Early start called for by young people themselves
(Shaw KL 2004; Stabile L 2005; Tuchman LK 2008)
Juvenile arthritis – 11 years
(McDonagh JE et al 2007)
Receives care
Participates
Manager
Supervisor
3 years?
11 years?
15/16 years?

26. Readiness for transition
Journal of Pediatric Rehabilitation Medicine 7 (2014) 43–51

27. Differences between paediatric and adult clinics
Focus on family
Rarely seen alone
Parental decision making
Prescriptive
Nurturing
Patient first
Often seen alone
Patient confidentiality- exclusion of the parents
Collaborative
Empowering
Rosen (1994)

28. Transition is a Process
Transfer is a Change

29. Change of focus Staying alive to living with chronic illness
Growth and development to chronic complications
Glycogen Storage Disorders:
Hypoglycaemia and growth vs obesity / insulin resistance
Galactosaemia: Liver failure vs bone mineral density & fertility
Phenylketonuria: Cognitive development vs quality of life
Getting a job and a family of ones own

30. Adults with IMD:
Stop growing
Are metabolically more stable
Can develop long-term complications

31. Transition is the process which prepares the family for the changes of Transfer

32. Paediatric
Adult