On Q Health's Chief Clinical Officer, Dr. Carrie Tompkins Stricker, gave a presentation on survivorship care plans in Tokyo, Japan during the 1st International Seminar on Cancer Nursing. The seminar theme was "The Role of Cancer Nursing in Improving Quality of Cancer Care: The Current Situation and Outlook for Developments 10 Years from Now". Learn more about survivorship and On Q Health's Care Planning System™: http://bit.ly/onqcareplans

1. Survivorship Care Plans in the U.S.:
Current Status and Future Challenges
Carrie Tompkins Stricker, PhD, CRNP, AOCN®
Chief Clinical Officer
On Q Health, Inc.
Oncology Nurse Practitioner
Abramson Cancer Center
University of Pennsylvania

2. Disclosures
• On Q Health, Inc.
– Officer and stock owner

3. Objectives
• To provide a brief history of cancer
survivorship in the U.S.
• To overview the current and evolving
status of cancer survivorship care delivery
in the U.S.
– Goals, challenges, models, & care plans
• To discuss innovation & future directions
in survivorship care delivery
– Including survivorship care plans

4. 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: http://seer.cancer.gov/csr/1975_2008/,
- Siegel, Naishadham, & Jemal, 2013. CA: Ca J Clin 2013; 63: 11-30v.
Cancer survivors growing in number
•*13.7million*
•as of 1/1/13
Despite decline in incidence rates of 1.8%/yr in men and 1.5%/yr in women

5. Profile of U.S. Cancer Survivors
• Over 13 million in the U.S.
– will double by 2050
• Lifetime probability cancer is high
– 45% for men, 38% for women
• 68% of adults diagnosed can expect to be
alive in 5 years
- Siegel, Naishadham, & Jemal, 2013. CA: Ca J Clin 2013; 63: 11-30v.
- 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 a special focus on cancer
survivorship care?

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

10. Institute of Medicine Report (2005)

11. From cancer patient to cancer
survivor
On treatment Post-treatment
… Lost in transition

12. Cancer survivorship: What are the
issues?
• Cancer survivors are:
– seen less often by the cancer care team
– at risk for many possible late effects of
treatment
– have many unmet needs
• psychological, social concerns
• persistent symptoms
• functional recovery
- Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost
inTransition. The National Academies Press: Washington, D.C.;

13. Experiences of Cancer Survivors
LIVESTRONGTM Survey (2010)
N=3129 post-treatment survivors
• 98% reported > 1 problem as a result of
cancer
– Physical problems (86%)
• Energy, concentration, sexual dysfunction,
neuropathy, pain were most highly endorsed
– Emotional concerns (93%)
– Financial & job related concerns (58%)
LIVESTRONG Report (2010). Accessed at http://www.livestrong.org/pdfs/3-0/LSSurvivorSurveyReport_final

14. LIVESTRONGTM survey:
Care patterns
– Receipt of care for reported problems
• Physical problems - 58%
– Although less than ½ received care for top 4*
• Emotional concerns - 50%
• Practical concerns - 20%
*Energy, concentration, sexual dysfunction, neuropathy

15. Cancer survivorship:
What are the issues?
• Health care providers of survivors
– Are often focused on other issues
– Often lack knowledge about survivorship
– Cannot keep up with demand
- 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.

16. Primary care providers lack knowledge
about cancer survivorship
• Primary care provider (PCP) knowledge of chemotherapy
effects
Cancer Drug % of PCPs that correctly ID’ed late effects (n = 1,072)
Cyclophosphamide 15% correctly identified premature menopause; 17% correctly
identified secondary malignancy as late effect
Oxaliplatin 22% correctly identified peripheral neuropathy
Paclitaxel 22% correctly identified peripheral neuropathy
Doxorubicin 55% correctly identified cardiac dysfunction
Only 6% of PCPs were able to correctly identify all late effects
Nekhlyudov L, Aziz N, Lerro CC, Virgo K. Presented June 2, 2012. ASCO Annual Meeting. Abstract 6008] UPDATE

17. Projected Supply of & Demand for Oncologists
ASCO Workforce Report, JOP, 2007

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

19. Surveillance tests are underutilized
• Cancer surveillance
– 38% of older breast cancer survivors do not
receive annual mammography[2]
• Late effects surveillance
– Only 14% to 26% of prostate cancer survivors at
risk for osteoporosis are screened/treated[3,4]
– 80% of Hodgkin’s Disease survivors s/p mantle
radiotherapy do not undergo recommended
echocardiograms[4
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.

20. Identifying Potential Solutions
Institute of Medicine (IOM) report, 2005

21. IOM Recommendation #1:
• Health care providers… & other
stakeholders should work to raise
awareness of cancer survivors needs…
and act to ensure the delivery of
appropriate cancer survivorship care

22. Survivorship care:
What are the elements?
• Prevention of new & recurrent cancers, and of
other late effects
• Surveillance for cancer and late effects
• Intervention for effects of cancer and its
treatment
• Coordination between specialty & primary
care
•Institute of Medicine & National Research Council, 2006

23. IOM Recommendation #1:
• “Act together to ensure the delivery of
appropriate cancer survivorship care”
…. But HOW?

24. Survivorship Care: Milestones
Excellence centers established
• 2005:
• LIVESTRONGTM Centers of Excellence Network
- models of care in academia and community
• 2008
• American Cancer Society (ACS) establishes National
Cancer Survivorship Resource Center with George
Washington University
Insert Network diagram and LOGO

25. Models of Care established
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

26. Guidelines and pathways upon which to
base models
• 2006
– 1st ASCO Survivorship guideline (fertility
preservation)
• 2011
– LIVESTRONG Essential Elements of Care
• 2013
– National Comprehensive Cancer Network (NCCN)
publishes first Survivorship guidelines
Survivorship Care: Milestones

27. IOM Recommendation #1:
• “Act together to ensure the delivery of
appropriate cancer survivorship care”
…. How ELSE?

28. IOM Recommendation #2:
Survivorship care plans
“Patients completing primary treatment should be
provided with a comprehensive:
1. Cancer treatment summary
2. Follow-up (survivorship) care plan
… that is clearly and effectively explained
Hewitt, Greenfield, & Stovall (2006). From Cancer Patient to Cancer Survivor: Lost in
Transition. The National Academies Press: Washington, D.C. (p. 151).

29. Survivorship care plans:
Components
• Cancer type, treatments, complications
• Possible consequences, including late effects
• Timing, content, & coordination of follow-up
care, surveillance,
– Including health promotion, healthy living
• Resources & referrals, including psychosocial
services
•Hewitt, Greenfield, & Stovall (2006). From Cancer Patient to Cancer Survivor: Lost in
•Transition. The National Academies Press: Washington, D.C. (p. 151).

30. Survivorship care plans
• Examples

31. Journey Forward

32. LIVESTRONG Care Plan

33. Survivorship care plans:
Current status in the U.S.
• Limited reach
• Time-consuming and inefficient
• Narrow focus
– Little attention to psychosocial needs,
health promotion
• Personalization to individual needs
lacking

34. Survivorship Care Plans (SCPs):
Limited reach
• NCI-designated (university) cancer
centers1
– 43% of centers deliver SCPs to breast or colorectal
cancer survivors
• Nationwide (U.S.) randomized sample2 of
community and academic centers
– <10 % of oncologists delivered SCPs
– <5% delivered SCPs that outlined
responsibility for care
1. Salz et al. 2012; 2. Blanch-Hartigan et al., 2014.

35. SCPs: Time-consuming & inefficient
• LIVESTRONGTM Center of Excellence
Network of academic & community cancer
centers (n = 13)
– Reach
• Most sites (2/3) serve <10% of breast cancer
survivors
– Average time to prepare and deliver SCP
• 2 ½ - 3 hours per patient
• Chart abstraction: > 1 hour for > 1/3 of sites
Stricker C, Jacobs L, Risendal B, et al: Journal of Cancer Survivorship 5:358-370, 2011.

36. Why so time consuming to
prepare SCPs?
• Cancer care occurs in many settings
• Communication and information-sharing
is poor
• No centralized (electronic) medical
record
• Survivors’ needs vary and are not
systematically addressed
Dulko et al. (2013). Oncol Nsg Forum 40: 575-80.

37. Survivorship Care Plans (SCPs):
Gaps in content
• N = 65 SCPs in 13 LIVESTRONG centers
– Content areas poorly addressed
• Supportive care provided
• Coordination of care; referrals
• Psychosocial effects
• Healthy living
• Relatives cancer risk & need for surveillance
Stricker, C.T., Jacobs, L.A., Risendal, B. et al. Journal of Cancer Survivorship (in press)

38. Survivorship care plans (SCPs):
“Helpful, but not good enough”
• Key patient perspectives on SCPs
delivered in LIVESTRONG network study
– Information helpful; “wish I had received it
sooner”
– Personalization needed
• So much information is overwhelming
• “What is relevant to me?”
– Need for more actionable information
• What to report, to whom
• Healthy living recommendations
Unpublished data; Stricker, Jacobs, Palmer et al

39. SCPs: Improving beyond the
current state
• Extending reach
– Mandating delivery
– Modifying requirements, templates
– Improving efficiency
– Reimbursing delivery?
• Improving content
– Guidelines, pathways
– Psychosocial emphasis (IOM report)
Birken et al. (2014).
Mayer DK (2014). Clin J Oncol Nurs 18(6):615-6.

40. Survivorship Care Plans:
Mandatory for many in 2015
• The Commission on Cancer (CoC) accredits
cancer centers who meet CoC standards
– 71% of cancer patients are treated in CoC
accredited centers
• CoC Standard 3.3
– Requires a comprehensive care summary & follow-up
plan to patients with cancer completing curative
cancer treatment
– Must be implemented by 1/1/2015
•Commission on Cancer, 2011. Cancer Program Standards: Ensuring Patient – Centered Care

41. Readiness survey of CoC
member institutions (early 2014)
• Only 37 percent "completely confident”
in ability to implement SCP by 2015
• Only 21% had developed a SCP
process
…. the CoC responds…
Mayer DK (2014). Clin J Oncol Nurs 18(6):615-6.

42. Commission on Cancer
Standard 3.3: updated 9/9/14
• Target population
– 10% of all patients by 1/1/15
– 100% by 1/1/19
– Focus on high volume malignancies first
• Breast, colorectal, lung, lymphoma, prostate
• Content specifications
– Modified to be more achievable (ASCO template)
Mayer DK (2014). Clin J Oncol Nurs 18(6):615-6.

43. American Society of Clinical Oncology
(ASCO) template: 2014 update
http://www.cancer.net/sites/cancer.net/files/cancer_survivorship.pdf

44. ASCO Treatment Summary
- less detail now required
http://www.cancer.net/sites/cancer.net/files/cancer_survivorship.pdf

45. Improving efficiency through
data interfaces
CANCER REGISTRY MEDICAL RECORDS

46. SCPs: Improving beyond the
current state
• Extending reach
– Mandating delivery
– Modifying requirements, templates
– Improving efficiency
– Reimbursing delivery?
• Improving content
– Guidelines, pathways
– More patient-centered focus
Birken et al. (2014).
Mayer DK (2014). Clin J Oncol Nurs 18(6):615-6.

48. ASCO Follow up Care Plan
- now more patient-centered
• Oncology team contacts & schedule of follow up
visits*
• Cancer surveillance tests for recurrence
• Cancer screening for early detection of new primaries
• Possible symptoms of cancer recurrence to report
• Late- and/or long-term effects (symptoms to report)
• Non-medical concerns (e.g. emotional or mental
health, parenting, work/employment, financial issues,
and insurance)
• Health behaviors, health promotion
*who, how often, and where

49. Survivorship care plans:
Remaining challenges
• Care planning across the cancer
continuum
– Treatment planning from diagnosis
– Patients with non-curable disease
• Personalization of care plans
– to patient characteristics, concerns
Birken et al. (2014).; Mayer DK (2014). Clin J Oncol Nurs 18(6):615-6.

50. Expanding our vision of survivorship
• Cancer survivor (NCCS definition)
– Anyone diagnosed with cancer, from the
time of diagnosis and for the balance of life
• Many critical “survivorship” issues must
be addressed from time of diagnosis
– e.g., fertility, genetics, education about
potential symptoms and late effects

51. 56
IOM: Domains of the Cancer Care Continuum

52. Personalized care across the
cancer continuum
• Innovative solutions are needed

53. The On Q Care Planning System (CPS)TM allows
cancer teams to deliver personalized care plans to
patients in real-time
To deliver care plans, On Q collects patient-
reported outcomes (PROs) and clinical information for
use by a rules engine
- integrate patient goals, symptoms, concerns, and
preferences
•59
New solution: On Q Health, Inc.

54. Enters limited clinical data*
On Q Rules Engine App generates
CDS for oncologists via a customized
draft patient care plan
that incorporates relevant oncology
quality standards, current research
•PROPRIETARY & CONFIDENTIAL •60CDS = Clinical Decision Support
*Temporary solution until HL-7 interfaces are available.
Patient completes a
disease and
treatment-specific
questionnaire on a
mobile device at
each visit.
Care Team
Patient
Oncologist finalizes
and nurse counsels
patient on care plan
recommendations
What is the On Q CPS™?
Patient e-reports outcomes of
previously recommended
interventions.
Patients to receive a care plan
at each clinical encounter with
their oncologist.

55. • On Q offers survivorship care plans as one
component of its care planning system
• How are On Q survivorship care plans different?
– Highly personalized
• To both patient and institution
– Prospective, longitudinal
– Concise, clear guidance
– Comprehensive, continuously updated content
•CONFIDENTIAL AND PROPRIETARY •61
On Q Survivorship Care Plans

56. On Q CPS™ Survivorship care plans:
Surveillance and follow-up
•CONFIDENTIAL AND PROPRIETARY •63
Supports coordination of care

57. On Q Survivorship care plans:
Late effects education & health promotion
•CONFIDENTIAL AND PROPRIETARY •64
• Personalized, concise, and
actionable
• Healthy living information
• Local resources

58. • Also provides personalized supportive care
plans
– Management of existing symptoms and
psychosocial care issues
– Personalized healthy living advice
•CONFIDENTIAL AND PROPRIETARY •65
On Q CPSTM Care Plans

59. •CONFIDENTIAL AND PROPRIETARY •66
On Q CPS™: Psychosocial
assessment
is linked to….

60. … Psychosocial care management
•CONFIDENTIAL AND PROPRIETARY •67
Localized referrals and support for psychosocial distress

61. Survivorship care plans:
Future challenges
• Documenting outcomes of SCPs
– Few well-designed studies to date
• Improving coordination of care
– Clear definition of responsibility
• Longitudinal care delivery
– Not just “one and done”
– Adherence and tracking
• Dealing with workforce issues

62. Considerations for cancer
survivorship care in Japan
• Unmet needs of survivors in Japan
– Some similarities with U.S. survivors
– Also have important differences
• Preferences for support
– Greater desire for peer support

63. Cancer survivors in Japan have
unmet needs
• N = 628 Japanese cancer survivors
– Mostly lung, breast, colorectal, urologic cancer
• Unmet needs
– 25.7% had > 2 unmet needs
– Constant over time
– Highest in “medical-psychological”, financial
• Fear of recurrence = 17.4%
• Financial = 17.8%
• Employment = 14.5%
– Lowest in physical, sexual domains
Umezawa et al. (2014). Prevalence, associated factors, and source of support concerning supportive
care needs among Japanese cancer survivors. Psycho-Oncology DOI: 10.1002/pon.3702

64. Survivors in Japan prefer but lack
peer support for unmet needs
N = 628 cancer survivors
- Psychological and
financial needs highest

65. Cancer survivors in Japan:
Other concerns
• Young breast cancer survivors
– (30.7%) unsatisfied with ‘‘overall
communication with medical professionals”
Miyashita M et al. 2014;

66. Conclusions
• Cancer survivors experience many unique
needs that often remain unmet
– Capturing survivors voices is critical
• Systematic yet personalized approaches
are needed to improve quality
– Should consider personal and cultural
differences
• Infrastructure and technology solutions
needed to maximize effect
• Additional research needed

67. In spite of the uncertainties, there can
still be good quality of life after cancer!