1. National Cancer Survivorship Initiative The future requirements for Children and Young People Gill Levitt National Clinical Lead

2. How can we support our survivors in the adult arena? What are the issues?

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

4. Differing needs 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

6. 1990-1991(614) 63% 1980-1989 (4885) 48% 1970-1979 (3425) 26% Decade of Treatment 1960-1969 (1511) 12% 1950-1959 (502) 9% 0% 10% 20% 30% 40% 50% 60% 70% British Childhood Cancer Survivor Study: Percentages of survivors on hospital follow-up by decade of treatment. Category of Survivors (Numbers in Category) Percentage of number in category who are on hospital follow-up

7. 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 Screening for SMN The cumulative incidence of colorectal cancer in survivors, 1.4% by age 50 years Reulen et al. JAMA 2011 1.5 1.4 At least 2 first-degree relatives with colorectal cancer No radiotherapy 1.3 General population 1.2 1.1 ≥2 First-degree relatives with colorectal cancer 1.0 Expected general population 0.9 0.8 Cumulative incidence (%) 0.7 0.6 0.5 0.4 No radiotherapy 0.3 0.2 Expected general population 0.1 0.0 5 10 15 20 25 30 35 40 45 50 Attained age (years) Reulen, R. C. et al. JAMA 2011;305:2311-2319

8. 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

9. Survivors voice Transition When you’re applying for a job, you obviously have to say something, but it’s how much 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.

10. Survivors perspective Supported Self Management Supported self-management provides a positive approach to long-term aftercare I understand the side effects my treatment may cause in the future You can’t self manage if you don’t understand

11. 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

12. 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

13. 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?

14. 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%)

15. 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

16. 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