Principles of Good
Transition Care
– developing the essential link
between paediatric and adult care
Chris Kelnar
Chair, RCPE Transition Steering Group
Professor of Paediatric Endocrinology
Section of Child Life and Health
University of Edinburgh
Setting the scene…
• >90% of children with chronic illness
now reach adulthood
• Major potential impact on achievement
of developmental milestones
• Puberty heralds increases in the
prevalence of mental health problems
and substance misuse
What is transition?
Adolescence:
“A painful passage o’er a restless flood”
(William Cowper, 1731-1800)
Transition:
“A purposeful, planned process that addresses
the medical, psychosocial and educational needs
of adolescents…with chronic physical and
medical conditions as they move from child
centred to adult oriented health care systems.”
(Society for Adolescent Medicine 2003)
Evidence / examples of good practice
• Young people’s health with chronic illnesses
deteriorates and their engagement with
health services lessens around the time of
transfer to adult services
(McDonagh DoH 2006; Nakhla et al JPEM 2008)
• Liaison between paediatric and adult
services has evolved by serendipity or
through the enthusiasm of individuals
http://www.rcpe.ac.uk/clinical-standards/guidance/transition-medicine.php
Better Health, Better Care: Hospital Services for Young People in Scotland
http://www.Scotland.gov.uk/Publications/2009/05/07130749/0
Why is guidance needed?
• Bridging the gap between paediatric and
adult health care
• How best to treat the increasing number
of young adults surviving serious childhood
diseases….
Generic Issues
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Core principles
Education and independence
Ethical issues
Inequalities in health
Remote and rural issues
Fertility and sexual health
Core Principles for Transition – 1
• Transition is not synonymous with transfer – it must
begin early and be planned carefully
• Successful transfer as the culmination of a period of
planned transition care
• A transition programme should allow flexibility in
relation to the specialty, hospital or team
• Each hospital should have a transition policy setting
down the principles of transition from paediatric to
adult healthcare
• Ages at final transfer will vary, but it normally should
take place in the late teens
Core Principles for Transition – 2
• The transition process should extend beyond the day of
discharge/transfer from paediatric services, with
ongoing care received in the adult sector being of
equivalent quality and intensity
• Adult healthcare professional involvement may improve
patient satisfaction, clinic attendance and / or health
outcomes
• The transition process should address specific health
problems and how they affect the young person’s social,
psychological, educational and employment needs and
opportunities
• Young people must be involved in developing their
transition programme to enhance their sense of control
and independence
Education and Independence
• For young people
– Knowledge about their disorder / self-management
skills / other related life issues (housing /
employment / benefits etc)
– Dedicated education sessions
• For parents / carers
– Changing status with autonomy - “letting go” / adult
service provision
• For healthcare professionals
– Complexity of transition (medical / maturational /
educational)
Ethical Issues
• Beneficence and non-maleficence
• Justice
– justice1 – society’s benefits and burdens (including
health care interventions) should be distributed
equitably in the population
– justice2 – cases that are alike, in relevant respects,
should be treated similarly; cases that are
different, in relevant respects, should be treated
differently
• Respect for autonomy
– When and how to enter transition and achieve
autonomy
– Confidentiality and ethical dilemmas
Health Inequalities
• Impacts of deprivation and / or social
exclusion
– Train staff to identify those at high risk
– Transition co-ordinator (“Key worker”)
– Young people and their families actively
involved
– Cultural mediators (ethnic minority /
traveller /gypsy communities)
– Communication between services and 1ry /
2ry care
– Develop adult services where ‘none’ exist
(e.g. neurodisability)
Remote and
Rural Issues
Sexual Health and Fertility
• Risks of pregnancy / fear of
infertility
• When / how to explain condition and
its implications to boy- or girl-friends
• Contraceptive advice
• Contexts for gynaecology services
Exemplar conditions –
patient-specific issues (1)
• Cystic fibrosis
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Joint clinics seeing patients together
Advance handover of comprehensive medical records
Stressful!
Patient empowerment often unsettles parents
• Chronic renal disease
– Individual assessments and planning
– Vocational / career provision discussions
– Information packs about adult services / visits to
adult facilities
– Buddy system
– Formal process to say “goodbye”
Exemplar conditions –
patient-specific issues (2)
• Type 1 Diabetes Mellitus
– Shared philosophy of care between children’s
and adult teams
– Specific local protocols
– transfer at a time of relative health stability
– Easy access to psychological support
– Age-banded clinics for young adults
– Age of transfer should depend on physical and
emotional maturity as well as on local
circumstances
Exemplar conditions –
patient-specific issues (3)
• Long-term Survivors of Cancer
– Multidisciplinary team in age-appropriate
environments
– Risk stratification of follow-up needs
– “Late effects” nurse specialist for
support and co-ordination
– Active engagement of young people in
their care plans
Recommendations – 1
• Young people should be given the opportunity to
be seen without their parents
• Transition services must address the needs of
parents / carers, whose role in their child’s life
is evolving at this stage
• Transition services must be multidisciplinary and
multi-agency
• Optimal care requires that a sound co-operative
working relationship is developed between adult
and paediatric services, particularly where the
young person has complex needs with multiple
specialty involvement
Recommendations – 2
• The co-ordination of transitional care is critical,
requiring an identified co-ordinator (‘key worker’) who
supports the young person until he or she is settled
within the adult system. This could be an adolescent
nurse specialist, transition co-ordinator, community
nurse, youth worker, etc
• Young people should be encouraged to take part in
transition / support programmes and / or put in
contact with other appropriate youth support groups
• The involvement of adult physicians prior to transfer
supports attendance and adherence to treatment
• Transition services must undergo continued evaluation
– no one model fits all
Where next? – 1
• Young people have a right to expect accessible,
age-appropriate services and high quality
healthcare at every stage in their patient journey
• Development of clear transition policies within
local health plans
• Creating descriptions of local adolescent services
for young people, their families and healthcare
professionals
• Targeting research efforts into different models
of care, with particular emphasis on addressing
the inequalities challenge, and delivery of support
to young people living in remote and rural areas
Where next? – 2
• Promoting good practice for early adoption by
other teams, particularly where there is
limited reliable research evidence
• Seeking appropriate outcome measures to
assess the impact of changing models of care
• Adding an awareness of the special needs of
young people to all health-related education
curricula and training programmes
• Developing specialist training for the emerging
roles in adolescent medicine
Make It Happen: Challenges (1)
• Delivery of high quality age-appropriate health
care: patient-centred, structured, consistent,
well-understood
• Universal needs – but practical service
restructuring / development, and resource
implications, will vary between specialties,
clinics and healthcare systems
• Challenges of inequalities and delivery of
support in / to remote and rural areas
• Importance of multiagency (including education
and employment), as well as multidisciplinary,
working and communication
Make It Happen: Challenges (2)
• Identifying key workers, who may be from a
variety of disciplines / backgrounds, who make a
positive difference to families’ experiences of
healthcare especially when needs are complex
• Delivery of high quality care as locally as possible
• ‘Marginalised’ groups (ethnicity, deprivation,
social exclusion, mental/physical handicap)
• Lack of some key adult services
• To embed transition care as a key part of
adolescent health provision
The goals…
• The time of transfer to adult services
should be the culmination of a period of
planned and coordinated transition care
and guided by the choice and physical,
emotional and social maturity of the
young person
• To embed transition care as a key part
of adolescent health provision