An introduction to transition: what to expect and the differences between paediatric and - PowerPoint Presentation

Slide1

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 HospitalsSlide2

Adolescence describes the teenage years between 13 and 19 and can be considered the

transition

al 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.

https://www.psychologytoday.com/basics/adolescence

Adolescence: a time of transitionSlide3

“

purposeful, planned process that addresses the

medical, psychosocial and educational/vocational

needs of adolescents and young adults with chronic physical and medical conditions as theymove from child-centred to adult-oriented healthcare systems.”

Blum RW, J Adol Health 1993:14What is transition in healthcare?Slide4

Transition is the process which prepares the patient/family for the changes of

transfer

Paediatric Services

Adult ServicesSlide5

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 childrenSlide6

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 eventsAn education programmeOpportunities for the young person to meet the adult teamSlide7

Barriers to Transition

CliniciansSlide8

The Paediatrician’s View

The Physician’s View

Michael Rosen, Helen

Oxenbury

Tove

JanssonSlide9

Barriers to Transition

Clinicians

PatientsSlide10

“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

Adolescence

Give a girl social media and she can be just as bad!Slide11

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.Slide12

Barriers to Transition

Clinicians

Patients

ParentsSlide13

Parents

Impact of transition greater on parents than young people

Geerts

E et al 2008;Moons P 2009Discrepancies re: “right age” and perceived importance of transitional issues between health professionals and parentsGeenen SJ, 2003A third of health professionals reported parental difficulties during transitionShaw KL, 2004OverprotectionDurst CL, 2001; Shaw KL, 2004;Slide14

Journal of Pediatric Rehabilitation Medicine 7 (2014) 17–31

Experiences of patients with cerebral palsy and their parents transitioningSlide15

Barriers to Transition

Clinicians

Patients

ParentsWho to transition to?Slide16
Slide17

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 Aims and objectives of serviceSlide18

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 Slide19

Not so far to goSlide20

Apr

2014

1300 patients

c.93 different disorders

Inherited Metabolic Disease:

NHNN Patients under active follow-upSlide21

MCADD

Incidence c. 1/10,000

Patients attending our clinic - 10

PKUIncidence c. 1/10,000Patients attending our clinic - 300Where have all the patients gone?Slide22

Currently adults with MCADD are rare

NBS means that in 25 years time adults with MCADD will be much commonerSlide23

What is Transition about?

Taking responsibilitySlide24

Shared Leadership Model for Transition to Self-Management in Medical Care

Receives care

Participates

Manager

Supervisor

Provides care

Manager

Supervisor

Consultant

Major responsibility

Support

Consultant

Resource

Major responsibility

Patient

Healthcare professional

Parent

Age

(

Kieckhefer

GM &

Trahms

CM, 2000)Slide25

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?

15/16 years?

11 years?Slide26

Readiness for transition

Journal of Pediatric Rehabilitation Medicine 7 (2014) 43–51Slide27

Differences between paediatric and adult clinics

Paediatric

Focus on family

Rarely seen aloneParental decision making PrescriptiveNurturingAdult

Patient firstOften seen alone

Patient

confidentiality- exclusion of the parents

Collaborative

Empowering

Rosen (1994)Slide28

Transition is a Process

Transfer is a ChangeSlide29

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 ownSlide30

Adults with IMD:

Stop growing

Are metabolically more stable

Can develop long-term complicationsSlide31

Transition

is the process which prepares the family for the changes of

TransferSlide32

Paediatric

Adult