A national approach to improve the quality of Aftercare for survivors of TYA cancer - End of Treatment Summaries / Care Plans Dr Helen Jenkinson, Consultant Paediatric Oncologist on behalf of the NCSI steering group 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.

1. National Cancer Survivorship Initiative
A national approach to improve the quality of
Aftercare for survivors of TYA cancer
End of Treatment Summaries / Care Plans
Dr Helen Jenkinson, Consultant Paediatric Oncologist
on behalf of the NCSI steering group

2. Introduction
Estimated numbers of five-year survivors alive at the end
of successive calendar years, by attained age in years.
Great Britain, 1971-2005
• More than 40,000 survivors
of childhood cancer in UK
• 1 in 750 young adults
survivors
• 50% are adults
• Expanding by 1250/yr
Modified from Charles Stiller ‘Childhood Cancer in Britain’ 2010
National Cancer Survivorship Initiative

3. Consequences of Cancer Treatment
Mortality studies
Total Survivors
Morbidity studies
• 62% had at least 1 chronic condition
• 28% had severe/life threatening illness
• Cumulative incidence of a chronic
condition at 25 years was 67%
National Cancer Survivorship Initiative

4. Use of the end-of-treatment summary (EOTS)
USA Inst. Of Med. Report 2006
“From Cancer Patient to Cancer Survivor: Lost in Transition”
• recommended implementation of treatment summaries and
survivorship care planning
– care plans have not been formally evaluated by scientific studies but their
implementation is “common sense”
– “have strong face validity and can reasonably be assumed to improve care
unless and until evidence accumulates to the contrary”
– “further health services research should be undertaken to assess the impact
and costs associated with survivorship care plans, and to evaluate their
acceptance by both cancer survivors and health care providers”
(IOM report, 2006)
National Cancer Survivorship Initiative

5. Role of EOTS
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Optimise continuity between primary / secondary / tertiary care
Optimise coordination of care
Clarify roles in long term follow-up
Provide important information for health care community
Improves patient understanding
Empower survivors and encourages self-management
Improve uptake of follow up care with improved attendance
Easy access to information for a mobile population to share
with GP, University, Occupational Health, Insurance …
• Improved patient experience and quality of care
National Cancer Survivorship Initiative

6. Components of a treatment summary
• Background information:
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–
–
–
–
–
–
Demographics
Diagnosis
Treating centres
Complications
Significant events
Transfusion history
Allergies
Dates of completion / relapse
• Therapeutic summary
– Treatment protocol, chemotherapy, surgery, radiation fields,
cumulative doses and stem cell transplantation
• Potential long term effects
National Cancer Survivorship Initiative

7. Components of a survivorship care plan
• Recommendations for screening and follow up based on age, interval and treatment
received
• Systems at risk
• Recommendations for cancer screening/ surveillance for treatment effects
– Scheduling
– Who will do it
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•
•
•
•
•
•
•
•
Information on possible late and long term effects
Information on possible signs of recurrence and secondary cancers
Psychosocial, school, occupation and employment issues
Healthy behaviour advice
Immunizations
Genetic testing
Clear timeline for follow-up care and appropriate physician to provide it
Should be written by principal provider who coordinated oncology treatment
Personalized, dynamic
National Cancer Survivorship Initiative

8. What do survivors want?
• Information on:
– F/U care & surveillance
– Health promotion
– Late effects
– Interpersonal/emotional issues
– Support groups
– Insurance & returning to work
– Sexual function & fertility
– Genetic screening
(Narsavage, 2003, Beckjord, 2008, Michel 2009)
National Cancer Survivorship Initiative

9. Timing- When to give?
• Consultation at end of treatment
– “teachable moment” (Ganz, 2005)
• If patient too young to be presented information at end of treatment,
present to parents, then to patient when appropriate
• Update care plan regularly and at transition to GP follow-up/ adult
care.
National Cancer Survivorship Initiative

10. Examples of EOTS / Care plans
Trust logo
Contact details of late effect service
Christie / GOSH
Name
Telephone no
E-mail
Fax
Treatment Summary and Long Term Follow Up Plan
Name:
Hosp/NHS No:
Date of birth:
Sex:
Address:
Consultant:
Diagnosis
Diagnosis Date:
Stage/Group:
Treatment End Date:
/
Trial/Protocol:
Recurrence of Disease
Date
Site/s
Select
Management Summary
Select
Select
Chemotherapy
Select
Drug Effects to Monitor
Dose
Select
Select
Select
Surgery
Date
Select
Details
Radiotherapy
Date
Site/s
Select
Total Dose
Fractions
Normal Tissues within Field
Select
Gy
/
/
Select
Gy
/
/
Bone-marrow transplantation/PBSC
Type
Conditioning Regimen
National Cancer Survivorship Initiative
Select
Select
Date
Notes

11. Evaluation:
Methods
Issued Care Plan to 148
survivors across 6 National
test sites at
 End of treatment
 Entering LTFU
 Transition to adult services
Questionnaire evaluation
62 young people and 8
parents were given the
proposed TS/CP
National Cancer Survivorship Initiative
Survivors feedback
Results
Layout/Detail satisfaction 85%
Patient statistics
• Ages 12-35 yrs
• 1-26 years post treatment
TS/CP useful/very useful
• 83% young people
• 88% of parents
• 94% of shared care
doctors
• 90% of primary care
physicians
‘used it during a
consultation for eye
surgery’
‘saves me explaining to
doctors my medical history’
‘used it for school records
and applying to university’
‘took it with me abroad –
just in case’
‘took it to America to give
to my college so they
aware of my limitations’
‘used it when I went to
Accident and Emergency
to show the doctors
’

12. Treatment Summary
Insert GP Contact Details
Address
Insert Trust Logo and
Dear Dr X
NCSI Adult Workstream
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
DS 1500 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
Secondary Care Ongoing Management Plan: (tests, appointments etc)
Social Worker
Dietician
.
Clinical Nurse Specialist
Psychologist
Benefits/Advice Service
Other
Required GP actions in addition to GP Cancer Care Review (e.g. ongoing medication, osteoporosis and cardiac screening)
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
Signature:
Date:

13. Newcastle
Contact details of Long-term follow-up service:
Telephone 0191 28 20283
Fax
0191 28 24726
Nicola Davies (Specialist Nurse) 0191 282 9582
Treatment Summary and Long Term Follow Up Plan
Name:
Date of birth:
Address:
Hosp/NHS No:
Sex:
Consultant:
Diagnosis:
Trial / Protocol:
Diagnosis date:
Treatment end date:
Relapse
Date
Site(s)
select
Management Summary
Anti Cancer Drugs
select
Drug Effects to Monitor
Dose /M2
2
Anthracycline (specify which)
Total Anthracyclines (Doxorubicin equivalent)
2
Cyclophosphamide
2
Etoposide
select
select
select
select
select
Anti Cancer Surgery
Date
Details
Radiotherapy
Date
Site/s
National Cancer Survivorship Initiative
End date
Total Dose
2
2
2
2
select
select
Total Dose
Gy
Fractions Normal tissues within field

14. 1
Cancer Treatment Plan and Summary
ASCO
[Insert Practice Name/Info Here]
The Treatment Plan and Summary is a brief record of major aspects of cancer treatment. This is not a complete patient history
or comprehensive record of intended therapies.
Patient name:
Patient ID:
Medical oncology provider name:
PCP:
Patient DOB: (___/___/___)
Age:
Patient phone:
Support contact name:
Support contact relationship:
Support contact phone:
BACKGROUND INFORMATION
Symptoms/signs:
Family history/predisposing conditions:
Major co-morbid conditions:
Tobacco use: □ No □ Yes, past □ Yes, current (If current, cessation counseling provided?: □ Yes □ No)
Cancer type/location:
Diagnosis date: (___/___/____)
Is this a new cancer diagnosis or recurrence?:
□ New
□ Recurrence (date: ___/___/____)
Surgery: □ None □ Diagnosis only □ Palliative resection □ Curative resection
Surgical procedure/location/findings:
Tumor type/histology/grade:
STAGING
Study
Date
Findings
T stage: □ T1 □ T2 □ T3 □ T4 □ Not applicable
M stage: □ M0 □ M1 □ Not applicable
Stage: □ I__ □ II__ □ III__ □ IV__ □ Recurrence
Location(s) of metastasis or recurrence (if applicable):
TREATMENT PLAN
N stage: □ N0 □ N1 □ N2 □N3 □ Not applicable
Tumor markers:
Alternative staging system: ___________________
TREATMENT SUMMARY
White sections to be completed prior to chemotherapy administration, shaded sections following chemotherapy
Height:
in/cm Pre-treatment weight:
lb/kg
Post-treatment weight:
lb/kg
Pre-treatment BSA:
Treatment on clinical trial: □ Yes
□ No
Name of chemotherapy regimen:
Chemotherapy start date: (___/___/____)
Chemotherapy end date: (___/___/____)
Chemotherapy intent: □ Curative, adjuvant or neoadjuvant □ Disease or symptom control
ECOG performance status at start of treatment:
ECOG performance status at end of treatment:
□0
□1
□2
□3
□4
□0
□1
□2
□3
□4
Chemotherapy Drug Name
Route
Dose mg/m2
Schedule
Dose reduction
# cycles administered
□ Yes ______% □ No
□ Yes ______% □ No
□ Yes ______% □ No
□ Yes ______% □ No
□ Yes ______% □ No
□ Yes ______% □ No
Major side effects of this regimen: □ Hair loss □ Nausea/Vomiting □ Neuropathy □ Low blood count
□ Menopause symptoms □ Cardiac □ Other _________________________
National Cancer Survivorship Initiative
□ Fatigue

15. Lance Armstrong
National Cancer Survivorship Initiative

16. The UK picture: EOTS utilisation
National Cancer Survivorship Initiative

17. The UK picture: care plan utilisation
National Cancer Survivorship Initiative

18. Next steps:
• Introduction of a standard proforma
• Agreement on core content with ability to adapt to suit local
requirements
• IT developments to ease completion
• Modes of delivery to suit TYA community: app, email, paper ..
• Support for completion at end-of-treatment
• Implementation in TYA centres nationally
National Cancer Survivorship Initiative