national cancer survivorship initiative the future requirements for children and young people gill...

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?


Five-Year Survivors of Childhood Cancer by Age at Start of Year, Great BritainCourtesy of Stiller CA, UK National Registry of Childhood Tumours


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


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


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


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


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


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


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


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


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?


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


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


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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