An introduction to transitional
care
Ihab Shaheen
Consultant Paediatric nephrologist
Royal Hospital for Children
Glasgow-UK
Objectives
• What is an adolescence?
• Facts
• Challenges
• Bad figures that need attention...
• Solutions.......
Adolescent is a time of increasing independence,
experimentation, rebellious behaviour and peer pressure
What this will lead to????
Depression, lack of secure feeling, unknown
future
&
Anger, indestructible
Facts...number
The number of young patients graduating from paediatric to
adult renal care has progressively increased due to improved
management ( antenatal diagnosis, dialysis in young
children, general awareness,....)resulting in patient survival
rates of 85–90%
Fact..... Growth and development
A comprehensive, multi professional team of clinicians,
nurses, dietitians, social workers, play therapists,
psychologists and educators is the most effective way to
minimise disabilities and maximise the potential of each child
Fact....support
Support for children and families from a more diverse
multi professional team is one of the major differences
between paediatric and adult care
Facts....different CKD aetiology
Adult nephrologists may be less familiar with the
commonest cause of CKD in young children
( Genetic diseases)
Fact........it is a process
Transfer is an event that takes place at the end of a transition
process designed to prepare the young person with a chronic
condition to accept responsibility for his/her disease
management
What are the challenges?
Increasing
numbers
Special
needs
Relative
immaturity
Stressful
life events
Risk taking
behaviour
Learn self
management
Transfer to
new team
Reduced
compliance
Poor
outcomes
UK RR. NDT 2018. 33(2):356-364
Almost 1 in 10 young adults died by 5 years from start of RRT
A Paediatric UK study has shown that 35% of young renal
renal recipients had lost their transplants by 36 months
after transfer to adult real care.....
Watson et al, ped neph 2000
Ideal transition.....
Transition from paediatric to adult renal services: a consensus
statement by the International Society of Nephrology (ISN)
and the International Paediatric Nephrology Association (IPNA)
Be individualised for each patient after he/she has completed a
transition plan; this will depend upon completion of physical
growth and, where possible, educational, social and
psychological attainment
Be agreed upon jointly by the patient and his/her family/ in
conjunction with the paediatric and adult renal care teams
• Take place during a period without crises, especially if there is
unstable social support
• Take place after completing school education
• Introduced to the concept of transition in early adolescence
(12–14 years)
• Given information about transition in a gradual manner
appropriate to his/her developmental stage and intellectual
ability
• Include parents, other family members and even
boyfriends/girlfriends (if the young person agrees), as more
information lessens anxiety
• Be offered the opportunity of an informal visit to the
nominated adult service before transfer occurs
• Be given the opportunity to participate in group sessions with
other young people who are about to transition for peer-
support experience, peer support can be complemented by
establishing a local e-mail and social networking group
• Be able to receive tools to aid in the acquisition of disease
self-management skills, such as the transition medical
passport
• Provided with a generic transition plan that then can be
individualised for each patient, most transition plans have
certain competencies to be achieved at a certain age.
Examples....
• I understand my condition and can describe it to others
• I know my medications and what they are for
• I can make decisions for myself about my treatment
• I know what the adult clinic arrangements are and who will be
reviewing me in clinic
• I know how to make my appointments
• I can make my own transport arrangements to get to the
hospital for appointments
• I know who to call in a medical emergency
• I am able to talk about my worries concerning blood tests and
other treatments
• I know the dietary advice that I have to follow and the
importance of activity
• I have appropriate knowledge about sexual health matters
• I have discussed smoking and drug issues..
We are different....Egypt
• Extended care and support provided by parents....self
management/immaturity ....more family burden
More challenging here
• Lack/no specialised nurses,dietatians....Dr’s job to arrange all
aspects..
• Psychosocial issues versus financial load..
• Private sector.....even worse

An introduction to transitional care

  • 1.
    An introduction totransitional care Ihab Shaheen Consultant Paediatric nephrologist Royal Hospital for Children Glasgow-UK
  • 2.
    Objectives • What isan adolescence? • Facts • Challenges • Bad figures that need attention... • Solutions.......
  • 3.
    Adolescent is atime of increasing independence, experimentation, rebellious behaviour and peer pressure What this will lead to????
  • 4.
    Depression, lack ofsecure feeling, unknown future & Anger, indestructible
  • 5.
    Facts...number The number ofyoung patients graduating from paediatric to adult renal care has progressively increased due to improved management ( antenatal diagnosis, dialysis in young children, general awareness,....)resulting in patient survival rates of 85–90%
  • 6.
    Fact..... Growth anddevelopment A comprehensive, multi professional team of clinicians, nurses, dietitians, social workers, play therapists, psychologists and educators is the most effective way to minimise disabilities and maximise the potential of each child
  • 7.
    Fact....support Support for childrenand families from a more diverse multi professional team is one of the major differences between paediatric and adult care
  • 8.
    Facts....different CKD aetiology Adultnephrologists may be less familiar with the commonest cause of CKD in young children ( Genetic diseases)
  • 9.
    Fact........it is aprocess Transfer is an event that takes place at the end of a transition process designed to prepare the young person with a chronic condition to accept responsibility for his/her disease management
  • 10.
    What are thechallenges?
  • 11.
    Increasing numbers Special needs Relative immaturity Stressful life events Risk taking behaviour Learnself management Transfer to new team Reduced compliance Poor outcomes
  • 12.
    UK RR. NDT2018. 33(2):356-364 Almost 1 in 10 young adults died by 5 years from start of RRT
  • 13.
    A Paediatric UKstudy has shown that 35% of young renal renal recipients had lost their transplants by 36 months after transfer to adult real care..... Watson et al, ped neph 2000
  • 14.
    Ideal transition..... Transition frompaediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Paediatric Nephrology Association (IPNA)
  • 15.
    Be individualised foreach patient after he/she has completed a transition plan; this will depend upon completion of physical growth and, where possible, educational, social and psychological attainment
  • 16.
    Be agreed uponjointly by the patient and his/her family/ in conjunction with the paediatric and adult renal care teams
  • 17.
    • Take placeduring a period without crises, especially if there is unstable social support • Take place after completing school education
  • 18.
    • Introduced tothe concept of transition in early adolescence (12–14 years) • Given information about transition in a gradual manner appropriate to his/her developmental stage and intellectual ability
  • 19.
    • Include parents,other family members and even boyfriends/girlfriends (if the young person agrees), as more information lessens anxiety • Be offered the opportunity of an informal visit to the nominated adult service before transfer occurs
  • 20.
    • Be giventhe opportunity to participate in group sessions with other young people who are about to transition for peer- support experience, peer support can be complemented by establishing a local e-mail and social networking group
  • 21.
    • Be ableto receive tools to aid in the acquisition of disease self-management skills, such as the transition medical passport
  • 22.
    • Provided witha generic transition plan that then can be individualised for each patient, most transition plans have certain competencies to be achieved at a certain age. Examples....
  • 23.
    • I understandmy condition and can describe it to others • I know my medications and what they are for • I can make decisions for myself about my treatment • I know what the adult clinic arrangements are and who will be reviewing me in clinic • I know how to make my appointments
  • 24.
    • I canmake my own transport arrangements to get to the hospital for appointments • I know who to call in a medical emergency • I am able to talk about my worries concerning blood tests and other treatments
  • 25.
    • I knowthe dietary advice that I have to follow and the importance of activity • I have appropriate knowledge about sexual health matters • I have discussed smoking and drug issues..
  • 26.
    We are different....Egypt •Extended care and support provided by parents....self management/immaturity ....more family burden More challenging here • Lack/no specialised nurses,dietatians....Dr’s job to arrange all aspects.. • Psychosocial issues versus financial load.. • Private sector.....even worse