using data to build clinical service profiles and measure progress mike stevens
DESCRIPTION
Using data to build clinical service profiles and measure progress Mike Stevens Presentation from an event held in London on Wednesday 9 October with the Teenage and Young Adult (TYA) Centre Champions and our Clinical Leads to share learning, good practice examples, the successes, challenges and barriers to implementing: Treatment summaries End of treatment care plans Increased self-management for TYAs after cancer treatment The output from the meeting will be to define what support NHS IQ can provide locally to assist TYA teams in order to make progress with their implementation plans.TRANSCRIPT
TYA Spread and Implementation – Moving Forward
Wednesday 9th October 2013
“Using data to build clinical service profiles and measure progress”
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