1. Cancer Survivorship Care:
Global Perspectives and Opportunities for
Nurse-Led Care
Carrie Tompkins Stricker, PhD, CRNP, AOCN®
Oncology Nurse Practitioner
Abramson Cancer Center, University of Pennsylvania
Chief Clinical Officer,
On Q Health, Inc.

2. Objectives
• To define cancer survivorship & describe
survivorship care as a distinct phase of
the cancer care trajectory
• To provide an overview of cancer
survivorship care plans
– Goals, challenges, models, & care plans
• To identify and expand vision for nursing
roles in cancer survivorship care

3. Data source: Ries LAG, Melbert D, Krapcho M, Stinchcomb DG, Howlader N, Horner MJ, Mariotto A, Miller BA, Feuer EJ, Altekruse SF, Lewis DR,
Clegg L, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2005, National Cancer Institute. Bethesda, MD,
http://seer.cancer.gov/csr/1975_2005/, based on November 2007 SEER data submission, posted to the SEER web site, 2008.
-Also:-Also: http://seer.cancer.gov/csr/1975_2008/,http://seer.cancer.gov/csr/1975_2008/,
Estimated Number of Cancer Survivors in the
United States From 1971 to present
*14.5 million**14.5 million*
as of 1/1/15as of 1/1/15

4. True in Australia as well
• 1 in 2 men will be
diagnosed with cancer
before their 85th
birthday; 1 in 3 women
• Cancer diagnoses
expected to rise to
150,000 (from
~120,000) by 2020
• Survivorship
– 2/3 of people diagnosed
with cancer are likely
to survive 5 years or

5. Cancer survivorship worldwide
• Nearly 28.7 million
cancer survivors
globally
• in 184 countries
• within five years of
diagnosis (2008)
• Most prevalent
cancer
– Breast cancer (> 5
million)
• Most prevalent among
women in 145 countries
–
http://www.iarc.fr/en/media-centre/iarcnews/2011/globocan2008-prev.php

6. Cancer survivor, vs. cancer
survivorship care
• Cancer survivor (NCCS definition)
– Anyone diagnosed with cancer, from the time
of diagnosis and for the balance of life

7. Cancer Survivorship Care
Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in
Transition. The National Academies Press: Washington, D.C.

8. Why the unique emphasis on
cancer survivorship care?

9. Well, finally! I thought this thing would
never end!!!

11. Background
• Cancer survivors have unique needs
– Less contact with oncology team during the
survivorship period
– Complex medical and non-medical issues
• Symptoms, psychosocial issues, function, recovery,
long term and late effects
– Many needs remain unmet in current health
care system
– Coordination of care for cancer survivors
remains problematic
- Ganz PA, Casillas J, & Hahn EE (2008). Ensuring Quality Care for Cancer Survivors: Implementing the
Survivorship Care Plan. Seminars in Oncology Nursing 24(3): 208-217
- Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in
Transition. The National Academies Press: Washington, D.C.; - Grunfeld & Earle, 2010.

12. Symptom Burden and
QOL in Survivors
• ~1/3 of survivors
experience symptoms
after treatment
equivalent to during
treatment
• Most common:
– Fatigue
– Depression or mood
disturbance
– Sleep disruption
– Pain
– Cognitive limitations

13. Supportive Care Needs of Survivors
Inadequately Addressed
•n = 3,129 diverse cancer survivors

14. Cancer survivorship:
What are other issues?
• Care for cancer
survivors
– is often not
standardized or
systematized
– is not personalized
– is poorly coordinated
• Both under- and over-
utilization of services
is common
– is highly variable in
- Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in
Transition. The National Academies Press: Washington, D.C.;
- Grunfeld & Earle, 2010.

15. Underuse of necessary cancer-related
care
• Cancer surveillance
– 38% of older breast cancer survivors do not
receive annual mammography
• Late effects surveillance
• Only 14% to 26% of prostate cancer survivors
at risk for osteoporosis are screened/treated
• 80% of Hodgkin’s Disease survivors s/p
mantle radiotherapy don’t undergo
recommended echocardiograms
1. Salloum et al., 2012; 2. Schapira et al., 2000; 3.Tanvetyanon T. Cancer. 2005;103:237-241.
4. Yee EF, et al. J Gen Intern Med. 2007;22:1305-1310. Oeffinger, K.C., et al., Pediatric Blood &
• Cancer, 2010. 56(5): p. 818-824.

16. Under Use of Necessary Chronic Care
in Cancer Survivors
N=14,884 colorectal cancer survivors vs. matched
controls
•Cancer survivors more likely to not receive
recommended chronic care (OR 1.19, 95% CI,
1.12-1.27).
– E.g., follow-up care for CHF, diabetes, &
recommended preventive services.
•Elderly, poor, & minorities esp. at risk
Earle & Neville, 2004

17. Over-use of unnecessary care

18. Implications of Variations in &
Poor Coordination of Care
• Unnecessary costs
• Reduced opportunity
for new patient
visits
• Dissatisfied
referring providers
• Underutilization of
appropriate and
necessary care
– Potential for delayed
diagnosis and

19. Cancer survivorship:
Why the gaps in care?
• Health care
providers of
survivors
– Are often
focused on other
issues
– Cannot keep up
with demand
– Often lack
knowledge about
survivorship
–
- Ganz PA, Casillas J, & Hahn EE (2008). Ensuring Quality Care for Cancer Survivors: Implementing the
Survivorship Care Plan. Seminars in Oncology Nursing 24(3): 208-217
- Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in
Transition. The National Academies Press: Washington, D.C.

20. Oncologist Workforce Shortage Looming
Erikson et al., ASCO Workforce Report, JOP, 2007
14 % increase14 % increase
48 % increase48 % increase
Gap of 9.4-15.0 million visitsGap of 9.4-15.0 million visits
68% of oncologist’s visits are for care of patients68% of oncologist’s visits are for care of patients
> 1 year from diagnosis> 1 year from diagnosis

21. Consequences
• Much cancer survivorship care must be
shifted to the community & primary care
– Oncologists must see new patients
• Cancer survivors will increasingly
shoulder burden of navigating ongoing
care
– self-management strategies will assume
increasing importance
Institute of Medicine & National Research Council, 2006;

22. Opportunity!
• Nurses strengths/skill sets are perfectly
positioned for survivorship care
– Prevention & education
– Early detection
– Intervention
– Coordination
– Promoting self-management

23. Survivorship care:
What are its components?
• Prevention
• Surveillance
• Intervention
• Coordination
Institute of Medicine & National Research Council, 2006

24. Survivorship care:
What are its components?
• Prevention of new & recurrent cancers, and of
other late effects
• Surveillance for cancer recurrence, or second
cancers; assessment for medical and
psychosocial late effects
• Intervention for consequences of cancer & its
treatment, including symptoms and medical &
psychosocial problems
• Coordination between specialty & primary care
Institute of Medicine & National Research Council, 2006

25. Nurse-led survivorship care
• Definition
– Delivery of evidence-based, patient-centered care
focused on outcomes, delivered by APNs
• Barriers
– Patient perceptions
– Physician (consultant) perceptions
– Competing responsibilities
• Solutions
– Partner & establish credibility first
– Set expectations from start of treatment
– Share data!
Gates and Krishnasamy (2009). CancerForum 33

26. Evolving data on outcomes of
nurse-led survivorship care
• Pilot studies of U.S., Australia “end of
treatment/transition visits” show:
– high patient satisfaction1,3,4
– reduced patient concerns/unmet needs2,4
– improved preparedness to manage healthcare3
1.Crowley et al 2010; 2.Jagielski et al 2010; 3.Salner et al 2012; 4.Jefford et al. 2011;1.Crowley et al 2010; 2.Jagielski et al 2010; 3.Salner et al 2012; 4.Jefford et al. 2011;

27. Randomized trials of nurse-led care
• RCT’s of specialty nurse-led models of
follow-up care (U.K., Sweden) show:
– No difference in time to detecting recurrence or in
overall survival5, 8
– Equivalent or superior patient satisfaction5,6,8
&QOL7,8
– Improved symptom control8
– No increase in anxiety5,7,8
– Greater referrals and liaison w/support services9
5. Beaver et al., ’09 6. M Kimman et al., 2010; 7. Kimman et al., 2011. 8. Koinberg et
al.2004, 9. Faithfull et al Br J Cancer. 2001;85:1853-64.

28. Global care models involving
nursing
• U.K.
• Australia
• Canada
• U.S.A.

29. Cancer Survivorship Care: Models
• What is a “model” of survivorship care?
– No broad consensus
– “Involves a broad an holistic approach to follow-up
care for cancer survivors, addressing multiple needs”
– Models highly variable across settings
– Common goal
• Improving quality of care through comprehensive,
coordinated, tailored follow up care
M.T. Halpern et al (2015). Models of Survivorship Care.M.T. Halpern et al (2015). Models of Survivorship Care. J Oncol Pract 11J Oncol Pract 11(1).(1).

30. What is the evidence for various
models?
• Bottom line
– Extremely limited, research needed!
• Technical brief prepared for AHRQ*
– Only 9 studies meeting criteria
• Include > 2 survivorship care components
– Identified nurse-led, physician-led,
survivorship care plan centered, & individual
vs. group models
*AHRQ = Agency for Healthcare Research and Quality
M.T. Halpern et al (2015). Models of Survivorship Care. J Oncol Pract 11(1).

31. U.K. – National Cancer Survivorship
Initiative
• Partnership between National Health
Service (NHS), MacMillan Cancer Support,
Department of Health
– …. And many others
• Focus
– Risk-stratified pathways for breast, prostate,
and colorectal cancer
• Nurse role critical to implementation!
– Special thanks to Surpal Grewal, CNS for sharing her role!
http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC14481howtoguide.pdf

32. U.K. – National Cancer Survivorship
Initiative
http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC1448http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC1448
1howtoguide.pdf1howtoguide.pdf

33. Preliminary data on pathways from
NHS improvement sites
http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC14481howtoguide.pdf
Critical elements for self-managed pathway
•Remote surveillance, IT support
•Guaranteed reaccess
•Patient needs

34. Nurse specialist central to self-management
pathway

35. U.K.: Moving survivorship earlier in the
continuum
http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC1
4481howtoguide.pdf

36. Australia
• Thanks to Michael Jefford and Nicole Kinnane
for sharing!

40. Canada
• Example from Ontario
• Thanks to Jennifer Jones, PhD

41. Survivorship Care: Ontario

42. Wellness Beyond Cancer Program
• Group sessions for patients and families post-
treatment to promote self care and empowerment
• A consultation service for family physicians/nurse
practitioners including a rapid re-entry process
• A health professional educational strategy
• An evaluation framework & plan for a research
agenda.

43. Content of SCP
1) Disease information
2) Treatment information
3) Surveillance Plan
4) Persistent and late effects and their
management
5) Symptoms to report
6) General health and wellness information
Electronic solution:
Medical information drawn from existing UHN databasesMedical information drawn from existing UHN databases
Lives in EPR as a link to external platformLives in EPR as a link to external platform

44. Survivorship Care Program Development

45. Electronic SCP

46. Nursing Training

47. Model of Delivery

48. On-line Education

49. Models of Care – U.S.
Clinical Models
• Multidisciplinary
• Disease specific
• Consultative service
• Integrated Care
Model
• Others
– “Shared Care” model
an umbrella for
several
Providers
• MD
• Oncologist
• Primary care
• Nurse Practitioners
• Oncology
• Primary care
• Combined MD/NP
• Nurse navigators

50. Multidisciplinary
Advantages
• Easy for patients
• Comprehensive
• Good model for complex
patient (brain tumors)
• Common pediatric model
Challenges
• Resource intense
• Difficult to coordinate
• Possible multiple co-pays
• Not everyone needs all
services
•Patients seen/evaluated by different providers in the
context of a single clinic visit
•Oncology, endocrinology, neuropsychology, neurology,
social work, etc.

51. Consultative Service
Advantages
• Serves unrestricted survivor
population, outside referrals
• Provides core service, tx
summary/care plan
• Reinforces need for primary
care f/u and transition out of
cancer clinic setting
Challenges
• Difficult to be “expert” in long
term f/u issues for all diseases
• Difficult to have consensus
guidelines for f/u for all
• Buy in from patients & multiple
providers for patient referrals
difficult (patient choices for
PCP)
One time or annual consult visit
general survivorship issues
provide treatment summary/care plan
Referral to subspecialist, PT, nutrition, psych, etc.
Establish primary care home for survivor

52. Group Survivorship Care
Group survivor visits
(Duke)
– 6 survivors per group
session
– Individualized TS
prepared pre-visit by
NP
– Survivor engaged in
preparing SCP
– 45 minute group
session followed by
<20 minute post-session
visit with NP
– Multi-disciplinaryTrotter K. et al., 2009.Trotter K. et al., 2009.

53. Disease/Treatment Specific
Advantages
• Focused scope of practice
• Easier to make consensus
guidelines for f/u
• Good model for complex
patients (brain tumors, HCT)
• Good way to start out
Challenges
• Inequality
• May not address survivors with
greatest needs
• Survivorship clinic for specific cancer type
• e.g., breast, testicular, GYN, GI, Young Adults
• Can be developed for psychosocial services only

54. Integrated Care Model
Advantages
• Easy transition for patients
• Access to treatment history
• Works well for surveillance of
recurrent/new cancer as well
as for late effects
Challenges
• May restrict to certain diseases
• Patients may be reluctant for
transition to primary care
• May be difficult in a busy
clinical practice
Survivorship visit with treating oncology team
Survivorship NP or nurse navigator
Yearly or more frequent visits

55. Multidisciplinary supportive care referrals
(PT/OT, Psych/SW, Nutrition, Exercise, Pain Mx, CAM)
Multidisciplinary supportive care referrals
(PT/OT, Psych/SW, Nutrition, Exercise, Pain Mx, CAM)
DIAGNOSIS TREATMENT
Transition
visit
-TS/SCP
- 4 goals
Primary oncology team (MD +/- NP
& nurse)
EARLY
FOLLOW
UP
SURVIVORSHIP
POST-TX
FOLLOW UP
LONG TERM POST-TX
FOLLOW UP
UPENN INTEGRATED CARE MODEL
Pre-visit
assessment
Nurse Practitioner
Pre-visit
assessment
Ongoing
care visits
-4 goals of surv
Care
-Risk-stratified
transition to PCP

56. Survivorship Starting at Diagnosis
Minnesota Oncology
– CNS/nurse navigator
model
– Visits at baseline,
mid-cycle, EOT*
– FACT-G screen each
visit; drives
personalized care
– FACT-G plus SCP at
EOT
Outcomes
– High satisfaction (92%
*EOT = End of treatment
O’Brien and Stricker (2014).

57. Survivorship Models
• Common themes
– No one size fits all!
– Comprehensive needs assessment key
– Existing programs must support identified
needs
– Survivorship care plan is only a tool
– Care must be tailored to the individual

58. Survivorship Care Plans in Context
• “It’s not about the paper, It’s about the process”
(Melissa Hudson)
• …. a survivor care plan is only as good as the services
that it documents.
• … it is the services that a plan documents that are
so incredibly valuable to cancer survivors.
Silver, J. Physical Medicine and Rehabilitation 3, 503-506

59. Potential nursing roles in any cancer
care setting
• Recognize that cancer survivorship begins at the time of
diagnosis
– Address potential long-term effects at time of diagnosis
• Recognize that end of treatment is a difficult transition
period for survivors
• Assess patients for survivorship-related concerns
– Screening for psychological distress, impact on family and
relationships, practical concerns
– Assess for potential late effects, persistent symptoms
• Refer to appropriate supportive services
– Community resources
– Support groups, psychosocial support, family risk evaluation
– Specialized clinics & services
• Lymphedema, pain, physical therapy and rehabilitation

60. Potential nursing roles in any cancer
care setting
• Organize, coordinate, & communicate plan of
follow-up care
– Is there an approach to cancer survivorship care at
your institution?
– Be part of the team
• Develop educational & supportive programs
– Individualized education
– Group classes
– Newsletters/publications
– Patient conferences with a focus on cancer
survivorship

61. Conclusions
• Cancer survivorship begins at the time of
diagnosis, but is a distinct phase of the cancer
care trajectory
• Cancer survivors experience myriad unique
needs that often remain unmet
• Processes, models, programs, & tools for
improving cancer care are evolving
• Nurses are well prepared to play a critical role
in improving cancer survivorship care &
outcomes for growing #s of survivors