Transition to adult services - Gill Levitt
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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
- 2. Overview • • • • Setting the scene Documents on transition in cancer care Examples of good practise Barriers
- 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
- 7. National Cancer Survivorship Initiative
- 8. Work so far Publications on transition within cancer care.
- 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
- 18. Nu tri ti o n Be ne fits Th er ap ie s La te Ed ef uc fe at cts io n /E m plo Re ym la tio en ns t hip s/A nx ie ty Co m p Ex er ci s e In su ra nc e Fe rti l ity Education Did the session meet expectations? All courses (average %) 120% 100% 80% 60% 40% 20% 0%
- 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’
- 20. Barriers Very diverse disease profile Timing of onset of sequelae is variable immediate-many decades (Long term surveillance)
- 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…