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Transition Care –
South Australian
Model
Patrick
a young adults experience
&
Anne Jackson Nurse Consultant – Haemophilia
Women’s & Children’s Hospital
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Disclosures
Financial support to attend from Haemophilia
Foundation Australia:
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Transition Care – South
Australian Model
Anne Jackson
Nurse Consultant – Haemophilia
Women’s & Children’s Hospital
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Women's & Children's Hospital
Background
> Focus Group 2000• Highlighted need for information for parents
> Feedback – RAH Treatment centre
staff• Transferred with little to no knowledge of their
diagnosis & treatment
• Parents excluded from reviews
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Women's & Children's Hospital
Models of Care
> Discussed with HTC interstate on their
experience and programs in place
> Met with RAH Staff to determine their
expectations.
> Gathered resources and reviewed
literature
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Women's & Children's Hospital
Key Components
> Meet individuals need
> Education of young adult
> Transfer of skills to young adult from parents
> Support for parents
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Key components
> Start earlier
> Involve the child in treatment process
> Provide the bulk of the education prior to adolescence and then reinforce
> Key age 8-9 years old
> Assess child’s knowledge at each clinic visit
> Imbed into practice
The journey starts from diagnosis not when the child reaches a certain age, constantly working towards this.
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Women's & Children's Hospital
Transition Guidelines
National Hemophilia Foundation, New York
> Medical and Scientific Advisory Council
(MASAC)
• Transition Guidelines For People With
Bleeding Disorders
• Published March 2003
• Utilised principles
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Women's & Children's Hospital
Age Related Guidelines -
Check points
5- 9 years
Nursing
> Ensure patient knows the name of his illness
> Encourage child to interact independently with team
> Teaching patient to express symptoms of bleed to parent/caregiver
> Provide developmentally appropriate patient literature
> If patient has CVAD, discuss transition to peripheral access
> Discuss developmental tasks of school age (deciding to tell)
> Discuss transfer of knowledge to their child
Medical
> Encourage the child to interact independently with you
> Recap haemophilia general education and discuss
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Women's & Children's Hospital
Age Related Guidelines -
Check points
14- 17 years
Nursing
> Ensure adolescent can interact independently with team
> Ensure adolescent can identify his illness, treatment and products used
> Ensure youth is independent in record keeping for factor use and bleeds
> Discuss transition to Adult HTC
> Discuss patient responsibility to maintain good health i.e. appropriate
treatments
> Discuss any issues with peers
Medical
> Ensure the young adult interacts independently with you; allow mostly 1:1
time – (from 16years)
> Recap haemophilia general education with the adolescent
> Discuss alcohol, tobacco, drug use and consequences of impaired judgement
> Offer assistance to parents in discussing sexual health with their adolescent
> Discuss consequences of serious joint or muscle bleed
> Discuss sexual health and puberty with adolescent
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Women's & Children's Hospital
Transfer to Adult HTC
> Developed guidelines and package of
information for transfer to Adult
Haemophilia Treatment Centre
• Letter outlining the steps involved in
transferring care.
• Pamphlet developed by RAH treatment team
outlining services
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Women’s & Children’s
Hospital
Royal Adelaide Hospital
When do we transfer?
> Year 12
> When starting a new job?
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Women's & Children's Hospital
Transfer Clinic Format
> Young adult arrives and met for registration at
new centre (check in)
> Tour of Day Treatment Centre, Emergency
Dept, SA Pathology/Transfusion/Collection sites
> Brief overview with treatment team/introduction
to team and outline of format for the clinic
> Patients to see members of the treatment team
individually
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Women's & Children's Hospital
Transfer Clinic
> Re-consented for ABDR
> New treatment cards arranged
> Treatment products arranged
• Collected or delivered
> Management plans confirmed and documented
> Appointments for next review arranged
> All members of treatment team meet to discuss
individuals needs that need follow up and plans for
next reviews
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Women's & Children's Hospital
WCH Bleeding Disorder
Transition Model
Pt between 13-15years
Flagged for transition
Review as per aged based guidelines for comprehensive care review
Discussion about transition at review
Pt between 16-18years
Review as per aged based guidelines for comprehansive care review
Discussion about transition at review
Portion of appointment with HCP with patient only
Letter of notice of transition sent to patient and family
HCP prepares transition package
Pt 18years + (post completion of year 12)
(Transition)
Formalised transition meeting at WCH
i.e. combined meeting between paedsand adult/primary service
All applicable departments at WCH notified of transition
i.e. transfusion department etc
Pt transfered to adult services (RAH)
Post transition
HCP to follow up that first appointment has occurred with the referring centre
Transition
clinic now at
RAH for
Now not required for
those attending joint
transition clinic
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Women's & Children's Hospital
VWD & other Rare Bleeding
Disorders
Principles apply to all groups of young people with
chronic illnesses and should be available to all
Need to consider:
> The gaps in our service
> Opportunity to educate the young adult
> Those lost to follow up for those who are not
frequent attendees
> Value in ABDR registration
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Women's & Children's Hospital
“the purposeful planned movement of
adolescents and young adults with
chronic physical and medical
conditions from child-centred to adult
oriented health care systems”
Agency for Clinical Information (ACI), 2014
https://www.aci.health.nsw.gov.au
Transition
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Women's & Children's Hospital
> A systematic and formal process
> Early preparation
> Identify a transition lead/coordinator
> Good communication
> Individual transition plans
> Empower adolescent to self manage
> Follow up and evaluation
(ACI, 2016)
Key principles for transition
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Women's & Children's Hospital
> Increased reassurance about the process
> Improved readiness and empowerment for
adolescent
> Early identification of risk factors
> Clear processes and resources for staff to use
> Person and family centred
> Improved communication between teams
> Decrease in delayed transition
(WCHN Transition Working Group, 2017)
Benefits for staff and adolescents
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Women's & Children's Hospital
Patrick z
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> Funding support form HFA to attend
> Patrick for sharing his experience and
advice
Acknowledgements