Transition to adult services - Gill Levitt
NHS Improving Quality held an event in London on 31 July 2013 to progress the children and young people transition to adult services work with a focus on turning the rhetoric into practice entitled “Working to Define a Generic Service Specification for Transition”
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Transition to adult services - Gill Levitt
1. The Cancer Perspective to
Transition with a focus on the
challenges and barriers to
implementing change
Gill Levitt
Children and Young People Transition to
Adult Services Event
July 2013
3. Two populations
On treatment or still in follow-up for tumour
recurrence (lead clinician- oncologist)
In long term follow-up (no tumour recurrence
follow-up) diverse population ( no designated
lead clinician)
Two transition points
Childhood to TYA service (-25yrs)
TYA to adult service
4. Changing population
6000
2001 n=21022
2011 n=31368
Projected 2021 n=42336
Total number of survivors
5000
4000
3000
2000
1000
0
5-9
10-14
15-19
20-24
25-29
30-34
35-39
40-44
Age (in Years)
45-49
50-54
55-59
60-64
65-69
70+
Five-Year Survivors of Childhood Cancer by Age at Start of Year, Great Britain
Courtesy of Stiller CA, UK National Registry of Childhood Tumours
6. National Cancer Survivorship Initiative
Achievements from Children and Young People Work Stream
2008-13
Completion of three CYP patient pathways
Including 4 models of care
Recognition of the need for transition
9. Royal College Physicians Edinburgh
Transition document-cancer care
• Multidisciplinary long-term
follow-up of childhood cancer
survivors
• Clinical risk stratification
(16–18 years), to inform patient
pathway
• A late effects nurse specialist to co-ordinating care as young
people progress through the transition period.
• Effective transition from specialist paediatric oncology care to
appropriate adult supervision will be important.
• Active engagement of young people in their long-term followup/supervision
10. Publications specific for cancer survivors
RCN competence framework -Beyond treatment:
emerging nursing roles for the care of children and
young adults after cancer -
Includes
To ensure the smooth
transition of care either from
paediatric to adult services
or from
adolescent to adult services
Importance of nursing role in
transition
11. TYAC Transition- best practice
Principles
statement
• Preparation (anticipate transition
to and from services, ideally 12
months prior).
• Patient/family involvement.
• Key worker support.
• TYA MDT handover.
• Ensure ALL services in the
transition process are considered:
• Treatment summary/care plan.
• Joint/transition clinic.
• Transition policy.
• Professionals to work across
boundaries
(paediatrics, TYA, adult).
• Health promotion/education role.
• Effective communication and
collaboration.
12. Work so far
Publications on transition within cancer care.
Evaluation of nurse led transition clinics
13. Nurse-led model of follow-up
Pros
•Nurse easier to talk to
•Knows you well
•Option of telephone follow up
Cons
Nurse not as specialist as a
doctor
•May worry that things have
been missed
•Transition unclear
14. GOSH/UCLH Nurse-led transition
clinics (Susan Mehta)
Aim to evaluate the
effectiveness of a nurse-led
transition clinic
• A questionnaire was used to
evaluate the transition service.
• 70 questionnaires were
mailed and 12 young people
were interviewed by telephone.
• 76% response rate
Content of appointment
Personalised treatment
summary
Late effects and risk
stratification with care plan
Activities
Education/employment
Drugs
Sexuality
Mood
15. Results (1) Information transfer
• 75% reported that they
understood their treatment
and late sequelae
I did smoke and
stopped after the
appointment
Over 80% remembered
discussing aspects of
healthy lifestyle and some
reported making lifestyle
changes as a result
16. Results (2)
• 73% chose to attend their
consultation independently
although many had
travelled to their
appointment with parents
• 87% agreed that age
16–18 years was the right
time for transition.
Its not nice talking
about your private
life in front of your
parents
17. Work so far
Multiple publications on the subject of
transition within cancer care.
Evaluation of nurse led transition clinics
Education for survivors
19. Barriers
Change of philosophy
• Historically Paediatric oncologists either
discharged patients or continued follow-up….
Reason:
Who do we transition the
patients to –majority do not required acute
oncology care
‘We know our patient the best’
21. Lead contact GP
Wilms tumour- no late effects from
chemotherapy but single kidney
Germ cell tumour- surgery only
Planned review of care e.g.
hospital, community, face to face or phonerequire intermittent surveillance
Uncomplicated ALL – low dose cranial
RT, Anthracyclines
Complex management –Hospital care
ALL –
Treatment included an allogenic BMT
Endocrinopathy-Growth, gonadal
failure, diabetes, adult GHD and metabolic
syndrome
Cardiotoxicity
CGVHD-Obliterative Bronchiolitis
Bone- Avascular necrosis and Osteoporosis
Nephrotoxicity and hypertension
Cataracts
Psychosocial
Potential for SMN
Chronic disease model
22. Current position
Transition pathway not universally accepted therefore an
abrupt transfer to adult services for some.
Age criteria within existing paediatric and adult services are
not standardised throughout the country, making a
prescribed age transition statement difficult
Staying in the children’s/adolescent area longer than is
appropriate
Leaving medical supervision altogether, voluntarily or by
default
- ‘Resistance from some professionals to change’
- ‘Adult services are so stretched’
- ‘No equivalent adult service’
No additional funding for transition
TYA cancer services configuration across the country is
diverse.
23. Conclusion
Large diverse population
Requirement for good transition so survivors are
empowered to manage their health needs
Persuading commissioners money well spent but
outcome measured in years /decades
Improving QOL
Reducing emergency hospital admissions
Recognition of generic transition with ability for cancer
survivors to fed into other specialty transition services
Editor's Notes
Population who have been diagnosised during childhood/adolescence who are either still on treatment either for a relapse or as contining treatment and the logical step is referral to an adult oncologist .Second group are the group am going to talk about are those who no longer have a cancer diagnosis BUT……. and are the most challenging.
Increasing numbers by 10,000/decade BY 2021 >18000 survivors will require transition
20 CYP sites with many linking with peripheral paediatric centres and 13 TYC and many designated centres which up to now have been very individual in their workings. TYA centres on the whole no planned long term follow-up and no measures in the hospital reveiw
Within the Royal college document is a section for cancer survivors
NCSI commissioned work on nurse competamncies and within this was the recognition of the part nurses would play.
11 principles
This theme re referral to is a major barrier because…