TYA Spread and Implementation – Moving Forward

Wednesday 9th October 2013

“Using data to build clinical service profiles and measure progress”

m.stevens@bristol.ac.uk

Assumptions about what happens to TYA after completion of cancer treatment

• Care is likely to vary by centre and by site specific team

• Most patients will get care that principally focuses on monitoring for cancer recurrence +/- early toxicity

• Only a minority will receive tailored late effects / long term follow up surveillance (Aftercare)

Four questions we might wish young people to ask after their cancer treatment …..

What happened to me?

How does this affect my life now?

What help do I need now & might I need in the future?

Am I getting the care I need?

What do we know about TYA aftercare needs and the services they are offered?

What is the clinical profile of TYA survivors?

Is this different from what is known about childhood survivors?

How can we monitor service provision and its future development?

How can we monitor compliance with national standards?

Bristol Aftercare Audit Tool

• Established late 2010 for the paediatric aftercare service (SW Aftercare)

• Simple ‘tick box’ proforma utilised by the clinician seeing the patient after each consultation

• Data is entered onto an excel spreadsheet which generates analyses and reports

• Permits profiling of patients / groups of patients and provides service activity data

The experience of the SW Aftercare service• Majority of patients were treated in childhood (0-14 years) although many

are now (young) adults

• Data from the audit tool has been used to profile the service and monitor performance against national standards (treatment summaries & care plans)

• Supported by Care Coordinator role

Dr Rachel Cox, Ruth Elson, Divya Bassi

• Pilot experience also collected at UCLH

Dr Vicky Grandage, Susan Mehta, Dr Sonja Tattermusch

TYA survivor profile

Unselected patients attending SW AftercareDecember 2010 – June 2013

• 510 childhood survivors (diagnosed 0-14 years)

• 72 TYA survivors (diagnosed from 15 years)

TYA

Children

TYA

Children

Children

TYA

Children

TYA

Children

TYA

Children

TYA

Children

TYA

Children

TYA

Already known to other services (%)

Cardiology

Endocrinology

Neurology

Orthpae

dics

Reprod M

ed

Respira

tory

Other

Total

0

10

20

30

40

50

60

70

ChildrenTYA

Investigations undertaken (%)

Endocrine bloods

Other b

loodsDexa

Echo

Lung f

unction

Radiology

Other

05

1015202530354045

ChildrenTYA

Children

TYA

Children

TYA

Children

TYA

Other information collected

• Referral by whom• Time since last visit• DNA rate• ‘Significant’ new diagnoses since last visit• Seen by whom• Follow up plan and interval to next appointment• Referrals made• Information given• Unmet needs assessed

72 TYA patients

Conclusion

• Further work is needed to better profile TYA survivors and their needs

• This will define appropriate provision of resources for TYA aftercare and inform commissioning discussions

• The use of a simple audit tool allows the necessary data to be collected but requires data entry resource

• The tool could be simplified and rendered ‘generic’ for wider use – or developed with a generic ‘core’ module with opportunities for additional local data collection

Four very simple questions for young people

What happened to you in the past? Evidence that the patient has been given a treatment summary

How does this affect your life now?Evidence that an holistic needs assessment has been offered

What help do you need in the future?Evidence that an agreed care plan exists

How will you know you are getting the best care?Measurement of: One or two key disease related health / wellbeing indicatorsYoung person ‘friendly’ characteristics of the service