Download Slide 1

National Cancer Survivorship Initiative
The future requirements for Children and Young People
Gill Levitt
National Clinical Lead
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 Britain
Courtesy of Stiller CA, UK National Registry of Childhood Tumours
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)
National Cancer Survivorship Initiative
45-49
50-54
55-59
60-64
65-69
70+
Characteristics may include:
No routine outpatient attendances
Information “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 phone
Clinical examination if required
Patients with significant co-morbidities
Those who are unable/decline to self
manage
Characteristics may include: 20%
Complex rapidly changing health
Complex treatment complications or
symptomatic needs
Complex ongoing treatment regimes
Other input required e.g. Cardiology,
Haematology,
Gastroenterology
Requiring regular MDT reviews
National Cancer Survivorship Initiative
Differing needs
National Cancer Survivorship Initiative
British Childhood Cancer Survivor Study: Percentages of survivors
on hospital follow-up by decade of treatment.
Category of Survivors (Numbers in Category)
1990-1991
(614)
63%
1980-1989
(4885)
48%
1970-1979
(3425)
1960-1969
(1511)
1950-1959
(502)
0%
26%
Decade of
Treatment
12%
9%
10%
20%
30%
40%
50%
60%
Percentage of number in category who are on hospital follow-up
National Cancer Survivorship Initiative
70%
Frequency of hypothyroidism (%)
Lost to follow-up-Is it important?
Monitoring for endocrinopathy
BCCSS Data
n=12,978
Clinical effect-hypothyroidism
CNS tumours RT vs No RT
HD Treated RT vs no RT
Brabant et al, Int J Cancer 2011
35
30
25
20
15
10
5
0
CNS Disease
Cumulative incidence (%)
Screening for SMN
The cumulative incidence of
colorectal cancer in
survivors, 1.4% by age 50 years
Reulen et al. JAMA 2011
40
1.5
1.4
1.3
1.2
1.1
1.0
0.9
0.8
0.7
0.6
0.5
0.4
0.3
0.2
0.1
0.0
Hodgkin's Disease
Follow up Yes XRT yes
Follow up no XRT yes
Follow up Yes XRT no
Follow up no XRT no
General population
≥2 First-degree relatives with colorectal cancer
Expected general population
No radiotherapy
Expected
general
population
5
10
15
20
25
30
35
Attained age (years)
Reulen, R. C. et al. JAMA 2011;305:2311-2319
National Cancer Survivorship Initiative
At least 2
first-degree
relatives with
colorectal
cancer
No radiotherapy
40
45
50
Transition
Definition
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 voice
Transition
You need to
know how
the stuff in
your past is
going to
affect you
National Cancer Survivorship Initiative
When you’re
applying for a
job, you
obviously have
to say
something, but
That strikes me more it’s how much
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.
Survivors perspective
Supported Self Management
I understand the
side effects my
treatment may
cause in the
future
Supported selfmanagement provides a
positive approach to
long-term aftercare
You can’t self
manage if you don’t
understand
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
Specialists
GPs
Expertise,
effective
triage and
management
Survivors
Tumour
boards
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%)
National Cancer Survivorship Initiative
Responded
Median
follow-up
(range) responded
Not
Responded
< 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
Age at
diagnosis
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
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative