developing and standardising transition services in
TRANSCRIPT
Yvonne Owen Epilepsy Transition Coordinator
NCHG & Epilepsy Ireland
Developing and Standardising Transition Services in Epilepsy Care-
a coordinated approach
Aims of Transition
• Patient centred • Age appropriate • Individualised • Well informed patient / family • Improve sense of control and
independence • Develop skills in communication, self
management, decision making and advocacy
• Maximise capability regardless of ability • Support and guidance to family • Continuous care • Collaboration between services • MDT approach • Improved satisfaction with services • Improved health
Children’s
Services
Aim to
prepare well
Adult services Aim for long term Retention
Prevent rebound
Prevent falling through the gaps
Specific challenges in Epilepsy
SERVICE BASED
• Variation of services across sites
• Under care of Neurology, Paediatricians, GPs
• Wide ranging complexity of patient profile
• Large patient numbers
• Variation of resources between sites
• Wide distribution of patients to variety of adult sites
• Limited resources to introduce transition programme
• Change to routine
• Changes to staff
• Temporary role of coordinator
PATIENT BASED
• ↑ prevalence of intellectual or behavioural comorbidities
• ↑ risk of psychopathology for adolescents with epilepsy compared to healthy peers and peers with other chronic conditions
• Poorer social outcome for individuals with epilepsy (without ID) in terms of education and vocational status , psychiatric disorders and social interaction
• ↓ social participation and ↑ social isolation compared to peers
• Even “benign” remitting epilepsy have worse the social outcomes compared to other chronic conditions
• Families also experience social isolation, relationship problems and parenting problems
• Stigma /disclosure issues • Engagement of YP
Identifying Key Objectives
Review of existing services
Engage with Key stakeholders- Young people, parents, MDT
10 Key objectives
Proposed Epilepsy Transition Pathway 11/15/2017YO
PAEDIATRIC
Neurology
Clinic
Encourage teen
participation in clinic
Agree if ready for
transfer
Transfer to
ADULT
Neurology
Service Adult
transition clinic
Pre Clinic
Visit to
Adults
3rd
Transition
checklist
Introduce concept
of transition
Prepare Transition Pack
Explain and offer
split visits
STEP 1
AGE
12-14
STEP 2
AGE
14-16
STEP 3
AGE
16+
1:1 Consultation if
necessary
Adolescent Group
Education Session
Adolescent Clinic if
available
Receive
transition
information
2nd
Transition
checklist
Receive
introduction
booklet
Ensure on
registry
1st
Transition
checklist
Neurology Clinic
STEP 4
AGE
16+
Receive adult
service leaflet
Review
checklist in
adults
YES-Refer
to adults
NO-Wait
for 6/12
6
Beaumont Hospital St James’s Hospital
1 Paediatric REC 2 Adult REC
Cork University Hospital 1 Paediatric REC
1 Adult REC
University Hospital Galway Adult REC
1 Prof of Paediatrics (sub specialty in Neurology)
Sligo University Hospital Adult REC
2. Improving access to services
University Hospital Limerick Adult REC
1 Paediatrician (sub specialty in Neurology)
3. Transition Registry
• Established in 3 sites • Identify epilepsy patients by age • Flag who is due for transfer • Input what transition intervention was given • Identify adult service and status of referral • Log if Transfer pack completed • Log date of transfer • To come- Log follow up call (6 months after transfer)
4.Standardised Transfer Checklist
• Patient Demographic • Referring Hospital, consultant and
contact details • Adult service details • Checklist of contents of transfer
pack- • EEG • MRI • Letters • Prior Medications • Neuropsychology • MDT reports
5.Information Tools and Resources
• Transition Advice line
• Teen and Transition booklet (draft)
• Adult Services Directory
• Adult Service leaflets
• Regional talks to teens and parents
• EI Website developments
6. Transition Interventions
PAEDIATRICS • Adolescent Clinics
– TSCUH - ANP led clinics every 2-3 months
– OLCHC – consultant led beginning Jan 2018
• Adolescent Education Sessions – Group sessions in TSCUH since
2016 (6 weeks) – Developing group education
programme (2hr) pilot in OLCHC
– parallel teen and parents groups,
– MDT input – Nursing, Psych and Social work input where possible.
ADULTS • Beaumont Hospital
– Designated consultant – MDT Meet & Greet (3 per year) – Specific Transition clinic monthly – 60 referrals in 2017
• St James’s Hospital – Designated consultant – MDT Meet and Greet – Patient appointments for epilepsy
clinic arranged as per need – 29 referrals in 2017
• University Hospital Limerick – 1st transition clinic in 2018 – Plan for 2 clinics annually
Young Person
Psychosocial
• Feelings + Mood
• Friends
• Relationships
• Family
• Disclosure
• Stigma
• Support
Health & Lifestyle
• Alcohol /drugs
• Sport
• stress
• Diet
• Sleep
• Travel
Education & Vocation
• Study
• Exams
• College
• Career choices Sexual Health
• Puberty
• Contraception
• Folic acid
• Pregnancy risks
Self Advocacy
• Speaking up
• Being heard
• Getting involved in care
Independent Health Behaviour
• Epilepsy knowledge
• Triggers
• Treatment & adherence
• Adult services
TRANSITION CLINIC Dedicated clinic for young people Offered time alone Adolescent Checklist COVER 6 Core concepts
7. Staff Education and Support Coordinator role to support and facilitate delivery of services
– Provide updates to team on service
– Liaise and engage with teams regionally to explore opportunities for transition
– Provide supportive resource to tools to facilitate successful transition
– Plan to facilitate an Adolescent health and transition study day in future for HCPs.
– Explore opportunities to engage with staff in paediatric sites to
8. E Health integration
• On-going engagement with local IT teams and EPR team
• Pursue options of EPR in paediatric setting where possible
• Develop specific transition enhancements for EPR
• Engage with NCHG regarding IT requirements
9. Transition Policy Development
• NCCP P+N Transition Working Group • Online survey of HCPs views on Transition • 128 responses
• Currently drafting national document on guiding principles for transition for all chronic diseases and supportive resources.
10.Research and Audit
• RCSI Epilepsy Partnership in Care (E-PiC) study – YP Focus Groups
– Transition Workshop
• TSCUH STAR study (Crowley et al 2017) – Parent focus groups
– Group sessions
• Audit of Beaumont Hospital service, Transfer documents
• Measureable parameters for interventions