Robin Morash's presentation from the 2013 Regional Oncology Conference.

1. Meeting the Cancer
Survivorship Needs of
Colorectal Cancer Patients:
Wellness Beyond Cancer
Program
Robin Morash RN, MHS
The Ottawa Hospital Cancer Program
Northeast Cancer Centre
Regional Oncology Conference, 2013
Painting by P. Kenny – Cancer Survivor

2. Conflict of Interest Disclosure
• None to disclose
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3. Presentation Objectives
1. To describe the scope of our
evidence-based survivorship
program at The Ottawa Hospital –
objectives, key components,
knowledge translation initiatives and
evaluation framework.
2. To identify program outcomes to
date
3. To share early lessons learned in
creating a new model of well followup cancer care.
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4. Cancer Survivorship
Definitions of Cancer Survivors
From Cancer Patient to Cancer
Survivor: Lost in Transition
(IOM & NRC 2006):
National Coalition for Cancer
Survivorship (NCCS 2007):
Lance Armstrong Foundation
(LAF 2007):
Centre for Disease Control and
Prevention and LAF’s National
Action Plan (CDC 2004):
National Cancer Institute (NCI
2008):
People Living with Cancer
(2007):
Prevention
Following diagnosis and treatment and prior to the development of a
recurrence of cancer or death.
From the time of diagnosis and for the balance of life. NCCS has expanded its
definition of survivor to include family, friends, and caregivers.
From the time you find out you have cancer, through your treatment and for
the rest of your life.
The person diagnosed with cancer, as well as family members, friends and
caregivers
An individual is considered a cancer survivor from the time of diagnosis,
through the balance of his or her life. Family members, friends, and
caregivers are also impacted by the survivorship experience and are therefore
included in this definition.
The process of living with, through, and beyond cancer. By this definition,
cancer survivorship begins at diagnosis.
Screening
Diagnosis
Palliative
& end-of-life
care
Treatment
Recovery
Definitions Commonly Used in Practice
1. Diagnosis to end-of-life
2. Post-treatment to recurrence
3. Specific number of years after treatment
Reference: Environmental Scan of Cancer Survivorship in Canada: Conceptualization, Practice and Research, CPAC, 2008

5. Why change our model of follow-up care beyond
cancer treatment?
• Current model is not sustainable
• Opportunity to:
– improve access to quality cancer care across the
care continuum
– better meet the needs of cancer survivors
– provide care closer to home
– transition into wellness
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6. What are the essential components of survivorship
(follow-up) care?
• Prevention of recurrent and new cancers and other late effects
• Surveillance for cancer spread, recurrence, or second cancers;
assessment of medical and psychosocial late effects
• Intervention for consequences of cancer and its treatment
• Coordination between specialist and primary care providers to ensure
that all of the survivor’s health needs are met
Canadian Partnership Against Cancer-Pan Canadian Guidance on Psychosocial and
Supportive Care Services and Clinical Practices for Adult Cancer Survivors (2010)
IoM – From Cancer patient to Cancer Survivor – Lost in Transition (2006)
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7. Wellness Beyond Cancer Program
Purpose
Ensure that all people, at the end of their active cancer treatment, have access
to appropriate follow-up care & the resources required to best meet individual
needs.
Objectives
• Provide survivors and their health care providers
with a care summary & follow-up plan
• Empower patients to participate in the
management of their care & well-being
• Improve knowledge of health care providers
regarding survivor needs, assessment &
management strategies
• Improve cancer system efficiency, & enhance
transition & co-ordination of care for cancer
survivors
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9. Timelines
•
•
•
•
•
•
•
•
Retreat – May 2010
CCO call for proposals – aligned with TOH program objectives
WBCP team created
Support from larger CRC community
– MCC, Regional CoP, PFAC
Education –internal, external partners
Education –PCPs – regional sessions, GP yearly educational
day
CRC implementation – March 2012
Evaluation underway
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10. Wellness Beyond Cancer Program
• 3 follow-up scenarios based on risk and complexity while fostering
appropriate use of health providers;
• formalized partnerships with a community health centre, Maplesoft
Center, an evidence-based integrative cancer centre and the Canadian
Cancer Society;
• a post treatment needs assessment to identify individual patient needs;
• a wellness (survivorship) care plan supplemented with information about
survivorship needs and available resources;
• a discharge letter and accompanying care plan for patients and
community-based family physicians and nurse practitioners;
• group sessions for patients and families post-treatment to promote self
care and empowerment;
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11. Wellness Beyond Cancer Program
• an exit appointment with oncologist
and one on one counselling with a
nurse as required;
• a consultation service for family
physicians/nurse practitioners of
discharged patients including a rapid
re-entry process;
• assessment of adherence to
recommended surveillance and late
and long term effects;
• a health professional educational
strategy;
• an aligned evaluation framework and
plan for an evolving research agenda.
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12. 12

13. Discharge Criteria: Cancer Program to
Wellness Beyond Cancer Program
Patients who have completed adjuvant treatment:
 Primary Care Provider Stream
o Early stage disease
o No acute outstanding sequelae or side effects of treatment
o No outstanding issues or concerns
 NP Stream
o Persistent and/ or unresolved acute effects of treatment
and/or;
o Requiring continued follow-up and care at the centre
 Medical Specialist
o Outstanding acute issues requiring medical management
o Patients on clinical trials
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14. Patient Resources
• Program overview booklet
• Late and long term effects
education booklet
• Education sessions
• Wellness care plan
• Web site
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15. WBCP Education Classes
• Generic Survivorship Class
• Disease Site Specific
– Colorectal
– Breast
– Endometrial
• Future Direction
– Videoconferencing
– Group Discharge visits
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16. • Demographics
• Disease Summary
• Cancer Team
• Treatment Summary
• Recommended followup
• Summary of patient’s
self identified needs

17. Follow-up Care for Survivors of CRC
Test
Timeline
Medical History, Physical Exam,
and CEA laboratory test

Every 6 months for 5 years
Colonoscopy

One year after surgery
Frequency of future colonoscopies based on findings of
previous one, but in general to be done every five years.
If complete colonoscopy was not done at diagnosis, one
should be done within six months of completing primary
treatment.


Abdominal CT Scan
Once a year for 3 years*
Chest CT Scan
Once a year for 3 years*
Pelvic CT Scan
(For rectal cancer only)
Once a year for 3 years*
Additional Comments
* If local resources and/or patient preferences preclude the use of CT:
- An ultrasound can be substituted for CT abdomen or pelvis, and
- Chest x-ray can be substituted for CT chest.
These should be done every 6 to 12 months for 3 years then annually for 2 years (years 4 & 5).
Follow-up Care, Surveillance Protocol, and Secondary Prevention Measures for Survivors of Colorectal Cancer.
Cancer Care Ontario; 26-2 EBS: February 2012

18. Colorectal WBCP Referrals
The First Year (March 2012 – March 2013)
PCP
NP
Onc
Total
251
(77%)
66
(20%)
7
(2%)
324
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19. Evaluation Elements
•
•
•
•
•
•
•
•
•
•
•
•
Patient satisfaction
Patient needs and empowerment
Wellness care plan usage by patient and primary care provider
Discharges from cancer program (by physician)
Wait time from referral to consult
Follow up stream usage: family physician, nurse practitioner vs oncologist
Adherence to recommended follow-up tests/care
Incidence of late and long term effects
Use of psychosocial and regional resources
Health provider satisfaction (cancer program and primary care)
Health provider knowledge (cancer program and primary care)
Re-entry to cancer program
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20. Patient Experience Results
Needs Assessment: Top Ten
–
–
–
–
–
–
–
–
–
–
Tingling/numbness
Fear of recurrence
Bowel/bladder
Sleep disturbance
Fatigue
Weight changes
Body changes
Balance and mobility
Sexual issues
Managing emotions
Empowerment
– Capable of handling my illness
– Family are supportive
– Capable of helping reach
decision about my care
– Can adapt to changes in lifestyle
– Health professionals include me
in decision making
– I still feel useful in my daily life
– Friends are supportive
– I have all the information I need
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21. Education Classes
Better idea of how care coordinated
– Satisfied to Very Satisfied: 94%
Importance of follow-up testing
– Satisfied to Very Satisfied: 100%
Better understand resources available
– Satisfied to Very Satisfied: 100%
Management of Late and Long Term effects
– Satisfied to Very Satisfied: 96%
What our patients said:
• “Well presented & very informative”
• “A class act”
• “I learned a lot”
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22. Health Care Provider Feedback
“The WBCP has already demonstrated benefit to our patients by
reassuring them that the Cancer Centre has a plan for followup and other survivorship issues, and will be educating both
the patient and Primary Care Provider on these goals”
- Dr. Tim Asmis, GI Medical Oncologist, TOHCP
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23. Lessons Learned
Consider incentives
• Confidence in follow-up care
• Appropriate use of expertise and skills  oncologists focus on new
consults and patients on active treatment
• Timing – wait time strategies
• Access to evaluation data such as incidence of late and long term effects
• Introduction of new clinical role – NP
• Regional partnership enhancement –key stakeholder engagement
• Research opportunities
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24. Lessons Learned
Recognize disincentives/barriers
• Inadequate funding models
• Sustainability
• Lack of confidence in other care providers
• Piloted a new process mapping tool
• Oncologists desire to see patients doing well; balance of well patients
and those requiring more intensive care
• Patient reluctance to be discharged based on culture of long term
follow-up in cancer program
• Lack of regional integrated electronic patient record
Keep the momentum!
• Build sustainability into your plan!
– Explore funding opportunities
– Engage interested opinion leaders actively into the process
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25. Key References
Howell D, Hack T, Oliver TK, Chulak T, Mayo S, Aubin M, Chasen M, Earle C, Friedman A,
Green E, Jones G, Jones JM, Parkinson M, Payeur N, Sinclair S,
Sabiston CM, Tompson M. (2010). Pan-Canadian Guidance on Psychosocial and
Supportive Care Services and Clinical Practices for Adult Cancer Survivors,
Toronto: Canadian Partnership Against Cancer (Cancer Journey Advisory Group)
and the Canadian Association of Psychosocial Oncology, Dec 2010.
Environmental Scan of Cancer Survivorship in Canada: Conceptualization, Practice and
Research (2008). BC Cancer Agency for the Canadian Partnership Against Cancer
http://www.bccancer.bc.ca/RES/ResearchPrograms/SBR/News/Environmental+Scan.
htm
Canadian Invitational Cancer Survivorship Workshop: Creating an Agenda for Cancer
Survivorship (2008). Canadian Partnership Against Cancer
http://www.partnershipagainstcancer.ca./sites/default/files/journey/CPAC_CJ_Surviv
orship_0308_Final_E.pdf
From Cancer Patient to Cancer Survivor: Lost in Transition (2005). Institute of Medicine
and National Research Council of the National Academy
http://www.iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-inTransition.aspx
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26. Thank you!
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