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The Treatment Record Summary,
Cancer Care Review
Cathy Burton
Macmillan GP Advisor
Treatment summary project
• Effective monitoring and management of cancer
survivors by improved communication between
the specialist cancer team and multi disciplinary
primary care team
National Cancer Survivorship Initiative
Primary Care Perspective
• Increasing number of survivors
• Variable letters from hospitals – some examples of good
practice e.g. highlighted letters
• Summary details vary between hospitals
• What follow up is required? Who is responsible?
• Possible post treatment long term effects
• Aim of treatment, outlook
• Likely recurrence and signs/symptoms to watch for
National Cancer Survivorship Initiative
Developing and Piloting the TRS
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July – August 2009
Tested out prototype with 4-5 Oncologists as ‘critical friends’
Feedback from Oncologists and GPs
A standard format for a possible TS was formulated
Formal pilot phase in 11 test sites through NHSI
“ A summary of treatment provided to a patient’s GP by the
patient’s consultant
National Cancer Survivorship Initiative
Treatment Summary
Insert GP Contact Details
Address
Insert Trust Logo and Address
Dear Dr X
Re: Add in patient name, address, date of birth and record number
Your patient has now completed their initial treatment for cancer and a summary of their diagnosis, treatment and ongoing management plan are outlined below.
The patient has a copy of this summary.
Diagnosis:
Date of Diagnosis:
Organ/Staging
Local/Distant
Summary of Treatment and relevant dates:
Treatment Aim:
Possible treatment toxicities and / or late effects:
Advise entry onto primary care palliative or supportive care
register
Yes / No
DS1500 application completed
Yes/No
Prescription Charge exemption arranged
Yes/No
Alert Symptoms that require referral back to specialist team:
Contacts for re referrals or queries:
In Hours:
Out of hours:
Other service referrals made: (delete as nec)
District Nurse
AHP
Social Worker
Dietician
Clinical Nurse Specialist
Psychologist
Benefits/Advice Service
Other
Secondary Care Ongoing Management Plan: (tests, appointments etc)
.
Required GP actions e.g. ongoing medication, osteoporosis and cardiac screening
A Cancer Care Review is also required
Summary of information given to the patient about their cancer and future progress:
Additional information including issues relating to lifestyle and support needs:
Completing Doctor:
National
Cancer Survivorship Initiative
Date:
Signature:
Each Test Site developed their own way of using it
• Electronic version, completed by consultant in clinic
• Discharge letter template amended to include TRS
headings
• Word document completed by consultant (medical
info) and CNS (holistic info) jointly
• Form completed by CNS, signed off by consultant
National Cancer Survivorship Initiative
Challenges and Barriers
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•
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Technology
Time
Duplicating present systems to greater or lesser extent
Present systems can’t accommodate (tapes to India)
Too complex
Not appropriate for all types of cancer (haematological)
Agreeing at what stage(s) in journey to send TRS; may
depend on tumour type
National Cancer Survivorship Initiative
Rating usefulness of each section
Information provided to patient
Medication information
Actions needed by GP
On-going management plan
Service access arrangements
Alert symptoms
Figure 2: Rating of how useful TRS sections are
Treatment toxicities/Late effects
Treatment intent
Treatment details
Diagnostic information
0%
20%
40%
60%
80%
percentage of respondents
Very useful
Useful
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Not sure
Not useful
Not useful at all
100%
Made a difference to the way
patients are managed
Has it made a difference to the way you manage your
patients?
Better use of time
Better directed access
Fewer referrals to A&E/secondary care
Figure 4: Has it made a difference to the way you manage your patients?
Reduced duplication
Fewer calls to secondary care
0%
20% 40%
60% 80% 100%
percentage of respondents
Yes, definitely
National Cancer Survivorship Initiative
Yes, to some extent
No, none at all
No. Responses
Who is it useful for?
45
40
35
30
25
20
15
10
5
0
40
35
31
30
Figure 5: Who do you think the Treatment Record Summary would be
useful for?
6
GPs
District Nurses
Community
Macmillan
Team
TRS useful for …
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GP out of
hours service
Other
Would you like this service to continue?
•
10%
Yes in place of routine
clinic letters
Figure 6: Would you like this service to continue?
44%
Yes in addition to routine
clinic letters
No - continue with clinic
letters only
46%
National Cancer Survivorship Initiative
Levers
• Feedback from GPs and patients
• GP commissioners
National Cancer Survivorship Initiative
Influencing G.P. contract arrangements
National Cancer Survivorship Initiative
EVALUATION OF TEMPLATE PROJECT
• Assess the extent of usage
• Introduce to wider number of
practices
• Patient views
• G.P. views
National Cancer Survivorship Initiative
Aspects covered in the cancer care review
Anything else
Cover in cancer care review
The date of the next cancer care review
Recording the details of any carer(s) w ho are supporting the
patient
Recording w hether or not the patient has had radiotherapy or
chemotherapy treatment
Providing information or signposting to sources of information
about benefits the patient may be entitled to
Discussing the patient’s cancer diagnosis
Providing the patient w ith information about cancer
Review ing any medication the patient is taking for their condition
0%
10%
20%
30%
40%
50%
60%
70%
80%
percentage of respondents
Always
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Very frequently
Frequently
Sometimes
Never
90% 100%
percentage of respondents
User friendliness
70%
60%
50%
40%
30%
20%
10%
0%
Not at all user Not very user
friendly
friendly
Not sure
Fairly user
friendly
How user friendly is the template
GPs
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Macmillan GPs
Very user
friendly
Prompts in the template
Prompts in the template
Discussion about information needs
Discussion about the financial impact of
cancer
Figure 4: Prompts
Review of medication
Noting the details of the main carer
Discussion about cancer diagnosis
0%
20%
40%
60%
80%
percentage of respondents
Not at all useful
Not useful
National Cancer Survivorship Initiative
Somewhat useful
Useful
Very useful
100%
Usefulness of resources
"Talking to children w hen an adult has cancer" (a guide designed
to help talk to children about cancer)
"The Cancer Guide" (general information about cancer)
"How are you feeling?” (guide on the emotional effects of
cancer)?
"Things you might like to discuss w ith your doctor” (checklist on
possible discussion topics and signposting information on
Macmillan resources)?
"Hello and how are you?” (information for carers)?
"Money w orries: how w e can help” (information on Macmillan
grants and the Macmillan benefits helpline)?
"Help w ith the cost of cancer” (signposting to information on
benefits and financial support)?
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100
%
percentage of respondents
Not at all useful
Not useful
National Cancer Survivorship Initiative
Somewhat useful
Useful
Very useful
Patient satisfaction
15
No. Responses
16
14
12
10
8
6
4
2
0
1
1
1 - Not at all
satisfied
2
2
2
3
4
Overall satifaction
National Cancer Survivorship Initiative
5 - Very
satisfied
G.P. INTERVIEWS
• . ‘Sometimes when patients are diagnosed, they’re so
busy with hospital. They need medical certificates
from us but they don’t need other input at that stage’
• ‘(the cancer care review is) to support patients and
see how they’re doing’
• looking at it from an holistic point of view in terms of a
patient’s physical symptoms but also social and
psychological needs’.
National Cancer Survivorship Initiative
Benefits
• helpful, you don’t forget things. Useful as an aide de
memoir’ ‘useful for prompting’ ‘reminder of topics
to cover’ ‘make sure we don’t miss things and offer
consistent service’ ‘trigger for us to remember to
I
ask’;
• it is easy to miss that aspect which is potentially
important because you have not approached it in a
structured manner’
• Useful for coding’ and that it is ‘auditable’
National Cancer Survivorship Initiative
Barriers
• It does the basics but you need
detail… more patient driven things,’.
• If you sit and ask the question and
look at the computer and press a
button. But that’s not the way we use
it’
National Cancer Survivorship Initiative
Macmillan Practice Nurse Pilot
• Developing training package for practice nurses, to provide
skills/knowledge to allow nurses to better support cancer survivors in
the community
• 2 whole study days plus 7 half days over 2 ‘terms’
• Nurses will be encouraged to identify a patient for a full review, plan
the review and then report back, using peer support
• Variety of approaches will be used, co-creating health/motivational
interviewing plus training resources to provide nurses with wide range
knowledge covering late effects, secondary prevention, holistic needs,
supported by Macmillan patient information resources
• GP in practice agrees to mentor nurse
• Practice receives £1000 bursary
National Cancer Survivorship Initiative
Practice nurse course Mind Map 1
National Cancer Survivorship Initiative
Practice nurse course mind map 2
National Cancer Survivorship Initiative
Practice nurse course mind map 3
National Cancer Survivorship Initiative
Acknowledgements
• Rosie Loftus
• Terry Bowley
• Lucy Thompson
• Charles Campion-Smith
• Noeline Young
National Cancer Survivorship Initiative
Thank you
Any Questions?
[email protected]
National Cancer Survivorship Initiative