national cancer survivorship initiative the future requirements for children and young people gill...
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National Cancer Survivorship InitiativeNational Cancer Survivorship Initiative
The future requirements for Children and Young People
Gill Levitt
National Clinical Lead
National Cancer Survivorship Initiative
How can we support our survivors in the
adult arena?
What are the issues?
National Cancer Survivorship Initiative
Five-Year Survivors of Childhood Cancer by Age at Start of Year, Great BritainCourtesy of Stiller CA, UK National Registry of Childhood Tumours
National Cancer Survivorship Initiative
Characteristics may include:No routine outpatient attendancesInformation “prescription” and/or an educational intervention Automated surveillance tests with results by post or phone Ability to re access system with/without reference to GP
Characteristics may include:Planned review of care e.g. hospital, community, face to face or phoneClinical examination if required Patients with significant co-morbiditiesThose who are unable/decline to self manage
Characteristics may include: 20%Complex rapidly changing health Complex treatment complications or symptomatic needsComplex ongoing treatment regimesOther input required e.g. Cardiology, Haematology, Gastroenterology Requiring regular MDT reviews
Differing needs
National Cancer Survivorship Initiative
British Childhood Cancer Survivor Study: Percentages of survivors on hospital follow-up by decade of treatment.
Cat
ego
ry o
f S
urvi
vors
(N
umb
ers
in C
ateg
ory)
1950-1959 (502)
1960-1969 (1511)
1970-1979 (3425)
1980-1989 (4885)
1990-1991(614)
Decade of Treatment
0%
12%
26%
48%
63%
10% 20% 30% 40% 50% 60% 70%
9%
Percentage of number in category who are on hospital follow-up
National Cancer Survivorship Initiative
Lost to follow-up-Is it important?
Reulen, R. C. et al. JAMA 2011;305:2311-2319
5 10 15 20 25 30 35 40 45 50
1.4
1.5
1.31.2
1.11.0
0.9
0.80.7
0.6
0.5
0.40.30.2
0.1
0.0
Attained age (years)
Cum
ulat
ive
inci
denc
e (%
)
At least 2 first-degree
relatives withcolorectal
cancer
No radiotherapy
Expected general population
No radiotherapy
Expected general population
≥2 First-degree relatives with colorectal cancer
General population
0
5
10
15
20
25
30
35
40
CNS Disease Hodgkin's Disease
Fre
qu
en
cy o
f h
yp
oth
yro
idis
m
(%)
Follow up Yes XRT yes Follow up no XRT yes
Follow up Yes XRT no Follow up no XRT no
Monitoring for endocrinopathyBCCSS Datan=12,978Clinical effect-hypothyroidismCNS tumours RT vs No RTHD Treated RT vs no RTBrabant et al, Int J Cancer 2011
Screening for SMNThe cumulative incidence of colorectal cancer in survivors, 1.4% by age 50 yearsReulen et al. JAMA 2011
National Cancer Survivorship Initiative
TransitionDefinition
A multi faceted ,active process that changes care from paternalistic driven care (HCP/parents) to supported self management within adult services in parallel with the changing physical and emotional development that goes with the progress through childhood to adulthood.
Effective transition will facilitate safe self management and
inform the more dependant survivors
National Cancer Survivorship Initiative
Survivors voiceTransition
You need to know how the stuff in your past is
going to affect you
That strikes me more and more how really important [it] is that everybody gets that transition and then knows what to ask in it as well as what to get. Otherwise you’re left not sure.
When you’re applying for a
job, you obviously have
to say something, but it’s how much
National Cancer Survivorship Initiative
Survivors perspective Supported Self Management
I understand the side effects my treatment may cause in the
future
You can’t self manage if you don’t
understand
Supported self-management provides a
positive approach to long-term aftercare
National Cancer Survivorship Initiative
Next steps
Define models of transition, who/when/where/how often
Test outcomes – DNA rates
Reduction in acute admissions
Appropriate self referral/monitoring
Survivors experience
Economic evaluation
National Cancer Survivorship Initiative
Complex cases Where do these adults go? Who coordinates care? Do they require expert advice?
ALL –Treatment included an allogenic BMT • Endocrinopathy-,adult GHD, insulin resistance, metabolic syndrome
and gonadal failure• Cardiotoxicity• CGVHD-Obliterative Bronchiolitis • Bone- Avascular necrosis and Osteoporosis• Nephrotoxicity and hypertension• Cataracts• Psychosocial• Potential for SMN
National Cancer Survivorship Initiative
Expertise, effective triage and coordinated care
Questions?
• How many centres of excellence required?
• Who mans them?• Would virtual MDTs
assist management• Who hosts them?• Can this model work
across all ages?
National Cancer Survivorship Initiative
Can similar MOC within adult services serve both childhood and adult cancer survivors?
Study in progress Hodgkins survivors across all ages
• Single centre• Total no : 251• Response to date:
277 (54%)
Responded Median follow-up (range) - responded
Not Responded
Age at diagnosis
< 20 44 (18%) 30.2 (6.8-41) 37 (22%)
20-40 165 (66%) 25.7 (5.7 – 50.9)
112 (65%)
> 40 42 (17%) 15.8 (5.8 - 50) 24 (14%)
Grand Total 251
National Cancer Survivorship Initiative
QUESTIONNAIRE
• Validated measures for anxiety, depression, fatigue and impact of cancer
Cardiovascular, respiratory, fertility, endocrine problems and second malignancies
Patients’ perception of follow-up
Free text spaces
National Cancer Survivorship Initiative
The future• Working together.....• Need to create a seamless flexible pathway• Taking into account different needs and prevalence
of consequences of cancer treatment.• Common morbidities looked after by primary care• More complex expert MDT • Continue with commitment and effective leadership.
Thank you
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