late effects and the impact on a young persons future ruth elson
TRANSCRIPT
Late Effects and the Impact on a young persons Future
Ruth Elson
Increased Survival
Increased recognition of late effects
Healthcare Provision
Healthcare provision needs to address Late Effects as a
growing concern by recognising the need for specialist input.
Late Effects
Due to: The Cancer itself Surgery Chemotherapy RadiotherapyCan affect both physical and
psychosocial health
Plan Background to Adolescent / young
adult clinic Planning the clinic Setting up the clinic Funding Entry to clinic Guidelines After cure
Planning
Professor of Paed Oncology SW regional Survey
My Experiences What did we think we needed What did our regional centres need
Funding
We had to be creative Looked at patient Numbers Consultant’s Clinics Moving patients Appointment of new consultant gave the
opportunity to designate a lead role in late effects
Discussion with our colleagues
Role
To educate young adults about their disease, any late effects that they may experience and to empower them to make informed decisions about their future healthcare.
Ideal Clinic
One stop shop All specialities available Psychology support Teenage/ young adult environment
Entry to Clinic
16 years or over 5 years from diagnosis 3 years from end of treatment Referal from consultant Summary of treatment
SIGN 76: long-term follow-up of survivors of childhood cancer1
All survivors of childhood cancer should be actively followed up for life
At the end of a course of cancer
treatment, patients, their parents/carers and GPs should be given a summary of the treatment and a
list of signs of late effects to look out for
1. SIGN 76. Long term follow-up of survivors of childhood cancer, January 2004.
Each survivor of childhood cancer should have access to an appropriate designated key worker to co-ordinate care
1
CCLG: Therapy-based long-term follow-up practice statement1
Guidance for surveillance of survivors at least 3 years off therapy
Protocols designed for use in the out-patient setting
1. UKCCSG Late Effects Group. Therapy-based long-term follow-up, 2nd edition, April 2005.
Summarise treatment received under the
headings:
- Chemotherapy
- Radiotherapy
- Surgery
Work through ‘Treatment/potential late adverse effects’ lists and select
appropriate follow-up protocol1
NICE: Improving outcomes in children and young people with cancer1
Late effects clinicianMultidisciplinary team (MDT)
1. NICE guidance on cancer services: Improving outcomes in children and young people with cancer, August 2005.
Key worker
Risk of late effects discussed with the patient and parents/carers
Clear lines of communication
1
Surveillance of survivors
Care plans
After Cure
After Cure – Booklet
After Cure – Factsheets
After Cure – Treatment card
The Race For Life When times are hardTry to rememberThings always seemWorse than they are. Once upon a timeI used to believeLife would be quite simpleNow I know different. There will always beA person to judgeA starting lineSomeone to beatA hurdle to crossA way to runA race to winAn event to finish This race I call life. Bryony Carr 1996
One Young Person
1996 aged 17 years Bryony was diagnosed with a Medulloblastoma
Craniotomy, complete Macroscopic removal
Radiotherapy
Radiotherapy
Head 36 Gys in 20 fractions Spine 36 Gys in 20 fractions Head phase 2 18 Gys in 10
fractions
Recovery
Ataxia 6th nerve Palsy Posterior fossa syndrome Weakness on right side Relearn to speak, walk and write Delayed a year at school
Recovery continued
Took A levels gained a place at University to study Biomedical Sciences
During her first year Bryony relapsed
Multi focal relapse, cerebral hemispheres and spine
Relapse
Multi focal relapse, cerebral hemispheres and spine
MMT98 Protocol Ifosphamide, HD
Cyclophosphamide, Etoposide and Carboplatin
Autologous Stem cell transplant
Recovery
Went back to University Part time Lots of support Scribe for exams etc Gained Honours degree in
Biomedical sciences
Bryony today aged 30yrs
Pan Hypopituitism Epilepsy 2005 Ovarian failure and infertility Psychosexual difficulties Back pain Unemployed
Some of Bryony’s thoughts
Frustrated at some clinics, no time, repeat history
Poor short term Memory 30yrs but doesn’t look it, Father advocate what will she do
when she is 50yrs
continued
Many Friends Fought for independence Increase confidence Loss of Driving Licence Mobility City Life
Biggest impact
Change in expectation of future ‘By 30yrs I expected to be married
with 2 children and to have a career as a Scientist’
continued
Engagement broke because of loss of libido and Infertility
Volunteers for CRUK and the Wallace and Gromit appeal
Someone Invisible
An image in your mind of a person diggingDigging into the ground for a piece of hope
Someone who needs to express feelingsAnd show to the worldWhat they want to say
rather than what has been said beforeA person full of life
Needing the help and care fro all who listenFeelings shared with others
A face smiling in its happinessArms and legs staying strong
And the feet standing sturdy in joy
Bryony Carr (2008)