Updated March 2016. Dr. Carrie Stricker's recent survivorship presentation at the University of Kansas Medical Center.

1. Survivorship Care and Care Plans:
Transforming Challenges into Opportunities
Carrie Tompkins Stricker, PhD, CRNP, AOCN®
Chief Clinical Officer & Co-Founder
Carevive Systems, Inc.
Oncology Nurse Practitioner
Abramson Cancer Center
University of Pennsylvania

2. Disclosures
• Carevive Systems, Inc.
– Officer and stock owner

3. Objectives
• To describe the goals, content, and value
of survivorship care plans (SCPs) and
mandates for their delivery
• To discuss a step-wise approach to
implementing SCPs in your center
• Discuss examples of successful
implementation and outcome evaluation
• Describe existing evidence & gaps

4. New Models of Survivorship Care are
Needed
• Accountable Care Act (U.S.)
– Call for new care delivery models, population health
– Emphasis on cost as it relates to quality
• Institutions need solutions for “tsunami of
demand” due to aging & improved survival
• Current models inadequately address supportive
care needs of cancer survivors
– 70% of survivors in LAF survey said oncologist did offer
support for secondary/supportive care needs
– PCPs report knowledge gaps, & survivors express less
confidence in PCP’s survivorship care abilities
Cox. J.V., 2011; Wolff SN, Hichols C, Ulman D, et al. 2005; Mao, Bowman, Stricker et al., 2009; Kantsiper, M et al.
2009; Nissen, M.J., et al. 2007.

5. Implications of Survivors Unmet
Needs
• PATIENT: Negative health outcomes
– Two times greater risk of death in depressed
cancer survivors
– Unmet needs previously described
• SYSTEM: Cancer center loss of market
share
– Dissatisfied survivors may seek care elsewhere
– Greater population health costs
– Downstream revenue loss
Mois et al, 2013, Mayer et al., 2011; The Advisory Board Co. Oncology Roundtable, 2014

6. Opportunity
• Improve outcomes and QOL for cancer
survivors
• Improve the ability of oncologists to
provide care to cancer patients with
greatest need
• System ROI:
– Increase new patient volume and associated
revenue

7. Challenge
• Oncologists often want to maintain control
& do not coordinate care well
• Survivors are in limbo- who does what?
• PCP’s are not prepared
7
McCabe, JCO: 2013Grunfeld , JCO; 2006, 2011Cheung, JCO; 2009, 2010;
Del Giudice, JCO; 2009Nekhlyudov, JCO; 2009

8. 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

9. From Challenge …
To Opportunity
• Oncologists may want to maintain control
& do not coordinate care well
– Engage oncologists in the dialogue and planning
– Develop shared care and care transition models
• PCP’s are not prepared
– Provide education, resources, & tools (SCPs)
• Survivors are in limbo- who does what?
– Survivorship care plans!!!
9
McCabe, JCO: 2013
Grunfeld , JCO; 2006, 2011
Cheung, JCO; 2009, 2010
Del Giudice, JCO; 2009
Nekhlyudov, JCO; 2009

10. 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).

11. Purpose of Care Plans
Survivor
PCPOncologist
• Enhance communication
• Coordinate care
• Increase surveillance
• Identify and manage long term/late effects
• Encourage health monitoring and promotion

12. SURVIVORSHIP CARE PLANS:
MANDATES & STANDARDS

13. Survivorship Care Plans (SCPs):
Mandates
• Commission on Cancer (CoC)
– 10% of all cancer survivors by January 2015
– 25% by January 2016; 50% by Jan 2017
– 100% by 2019
– Focus on high volume malignancies first
• Breast, colorectal, lung, lymphoma, prostate
• National Accreditation Program for Breast
Cancer (NABPC)
– 50% of all breast survivors in 2015
– 100% in 2016
– Delivery by 6 months following treatment

14. Commission on Cancer (CoC)
Proposed Standard 3.3 (by 2015)
• The cancer care committee develops and implements a
process to disseminate a comprehensive care summary &
follow-up plan to patients with cancer completing cancer
treatment
• A survivorship care plan
– Is prepared by the principal provider(s) who coordinated the
oncology treatment
– Is given to the patient on completion of treatment
– Contains a record of care received, important disease
characteristics, and a written follow-up plan
Commission on Cancer, 2011. Cancer Program Standards: Ensuring Patient – Centered Care

15. 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
…. ASCO and the CoC respond…
Mayer DK (2014). Clin J Oncol Nurs 18(6):615-6.

16. SCP Since IOM Report: Barriers
• Inconsistent uptake
• Time to develop
• Lack of reimbursement;
• Lack of role clarity regarding who will be completing and
maintaining the information (oncologists, oncology nurse
practitioner/nurse);
• Lack of partnership between oncology and primary care
providers to facilitate communication and coordination of care;
• Paucity of data about SCPs and improved patient outcomes.
• A lack of compatibility of existing templates with EHR and
difficulty in capturing critical information into the SCP.

17. 10/14: ASCO updates & CoC endorses
required SCP components

18. ASCO Clinical Expert Statement on
Survivorship Care Planning
• Addresses barriers to SCP Delivery
– Esp. time to complete
• Key assumptions re: SCPs
– SCP should
• Be simple, clear, understandable
• Identify who is responsible for outlined actions
• Be given to those NED & completing active Tx
• Be shared with patient & PCP and stored in EMR
– Does not replace
• Discussions between patient & oncology provider
• The medical record
Mayer et al. (2014). J Oncol Pract [Epub ahead of print doi:10.1200/JOP.2014.001321.]

19. Treatment Summary:
ASCO data elements now with less detail
http://www.cancer.net/sites/cancer.net/files/cancer_survivorship.pdf
Principles for inclusion of data elements
Should influence follow-up care
Such data varies between cancer types, requiring
templates to be disease-specific
Enable contact with treating oncology providers as
required for ongoing or future care
Note: Many previously required details did not meet
these criteria (e.g., dose) and were removed

20. …BUT more emphasis on a
personalized follow-up plan
• Oncology team member contacts
• Need for ongoing adjuvant therapy
• Intervention to manage ongoing problems from cancer/Tx
• Surveillance plan, incl. who responsible*
– Schedule of follow up visits
– Cancer surveillance tests for recurrence
– Cancer screening for early detection of new primaries
– Surveillance for late effects
• Possible symptoms of cancer recurrence to report
• Late- and/or long-term effects (incl. symptoms to report)
• A list of items (e.g. emotional or mental health, parenting,
work/employment, financial issues, and insurance)
• Health behaviors and promotion
*who, how often, and where

21. 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.
– these services and resources are what is
so incredibly valuable to cancer survivors1
1Silver, J. Physical Medicine and Rehabilitation 3, 503-506

22. Stakeholder Perspectives
• Generally positive endorsement of SCPs
– Survivors
• have informational needs that SCPs address
• voice widespread support/desire for SCPs
– Primary care providers (PCPs)
• express lack of comfort in treating survivors
• view SCPs as fostering collaborative care
– Oncology providers
• voice support & value as a communication tool
• express pragmatic concerns about implementation
– Format, time, personnel, resources
Salz et al., 2012.

23. How to accomplish all this?
• Six steps!
a. To develop a programmatic approach to
survivorship care
b. To create treatment summaries and
survivorship care plans
a) Adapted from Cancer Survivorship Training - www.cancersurvivorshiptraining.com; courtesy of Jennifer
Klemp, PhD
b) Adapted from: Advisory Board Company: Oncology Roundtable, 2014

24. Courtesy of
Jennifer Klemp, PhD

25. Six steps
• To create treatment summaries and survivorship
care plans
Adapted from: Advisory Board Company: Oncology Roundtable, 2014

26. Step 1: Start Small
• Select target population(s) for pilot
– Start with a population where you have
champions & resources; grow from there
• Providers/staff
– Look internally to available resources
– Who’s available? Who’s interested?
• Convene a multidisciplinary team
– Engage stakeholders, incl. MDs

27. Case Example: Start Small
• Breast cancer pilot demonstration project
at UNC

28. Previous UNC SCP Efforts
Presented By Deborah Mayer at 2015 ASCO Annual Meeting

29. Step 2: Choose or Build a
Template
Step 3: Identify data sources

30. Step 2: Choose or build a template
• Understanding and weighing options
– Freeware
– Homegrown template(s)
– Commercial software

31. Step 2: Choose or build a template
• Understanding and weighing options
– Freeware (Oncolife, LIVESTRONG, Journey
Forward)
• Least automation; Greatest staff time
• Variable degree of content maintenance
– Homegrown/EMR template(s)
• Up-front staff/system investment
• Ongoing maintenance
– Commercial software
• Up front cost, with potential long term savings
– Automation, tailoring, content maintenance
– Downstream referrals, population management

32. Journey Forward

33. Journey Forward

34. LIVESTRONG Care Plan

35. SCP Options: Case Examples
• Freeware
– Journey Forward demonstration project* at
UNC over 1 year
• n = 75 approached, 34 SCPs delivered
• 90 minutes to complete surgery + chemo SCP
• Homegrown
– UNC
• Templates in EPIC developed over years
• High resource consumption to develop & maintain
content, challenges with implementation
• Commercial
– Hartford Healthcare; 2014 transition from
Equicare to Carevive
*Mayer et al, 2014

36. SCP Options: Case Examples
• Freeware
– Journey Forward demonstration project* at
UNC over 1 year
• n = 75 approached, 34 SCPs delivered
• 90 minutes to complete surgery + chemo SCP
• Homegrown
– UNC
• Templates in EPIC developed over years
• High resource consumption to develop & maintain
content, challenges with implementation
• Commercial
– Hartford Healthcare; 2014 transition from
Equicare to Carevive
*Mayer et al, 2014

37. EPIC Treatment Summary and
Survivorship Care Plan
Template
Highlights:
• EPIC 2014 (enhanced workflow
with EPIC 2015)
• @___@ fields will auto-fill
• MUST use the problems list
• Data can be manually entered
or smart text
• Functionality lost for version
2010 users is limited to
discrete data points
• Meaningful use:
• Printed and/or
• Included in MyChart
• Templates in prodution:
• General (customizable)
• Breast
• GI
• GU
• Lung
• Adult Survivors of
Childhood Cancers

40. SCP Options: Case Examples
• Freeware
– Journey Forward demonstration project* at
UNC over 1 year
• n = 75 approached, 34 SCPs delivered
• 90 minutes to complete surgery + chemo SCP
• Homegrown
– UNC
• Templates in EPIC developed over years
• High resource consumption to develop & maintain
content, challenges with implementation
• Commercial
– Hartford Healthcare; 2014 transition from
Equicare to Carevive

41. Carevive Survivorship Care Plans: Rules
driven, personalized SCPs

42. PCP Version

43. Step 3: Identify data sources
• Survivor identification and tracking
• Treatment summary data sources
• Care plan content

44. Challenges of SCP delivery:
Data/Content
• Populating treatment summary is difficult
and time consuming
– Data in many places, not discrete

45. Step 3: Identify data sources
• Treatment summary data sources
– Registry
– EHR
• Survivor identification and tracking
– Registry
– EHR
– Clinician dependent
• Care plan content
– Guidelines, evidence
– Resources, education

46. SCP Data sources: Case examples
• Treatment summary data sources
– EHR: Billings Clinic, Cerner
– Registry: Virtua/Hartford with Carevive
• Survivor identification and tracking
– St. Luke’s MSTI
– Virtua cancer center
• Care plan content
– Guidelines, peer-reviewed evidence
– Provider consensus?
– Resources and education

48. Registry-integrated SCP

49. Challenges of SCP delivery:
Data/Content
• Keeping content up-to-date and evidence
based is resource-intense and difficult
• Staff and IT resource utilization
– One center estimates investment of 1 year of
programming time1
– FT survivorship coordinator plus disease-specific
teams required to create & maintain templates2
1Zabora et al. (2015).; 2Rosales et al., 2013

53. Step 4: Assign Staff
Responsibilities
Step 5: Select a Delivery
Method

54. Step 4: Assign Staff
Responsibilities
• Which personnel for which steps?
– Data analysts/registrars?
– Nurses, nurse navigators
– Billing providers (APP’s, MDs)
• Considerations
– Availability, buy-in and sustainability
– Matching skill sets to responsibilities
• Operating at top of license/skill set
– Mix of skill sets

55. Slide 15
Presented By Deborah Mayer at 2015 ASCO Annual Meeting

56. EHR Implementation Issues To Address
Presented By Deborah Mayer at 2015 ASCO Annual Meeting

57. Slide 14
Presented By Deborah Mayer at 2015 ASCO Annual Meeting

58. Step 5: Select a Delivery Method
and Model
• Models of care
• Approaches to delivery

59. Evolving Survivorship Care Models
Multidisciplinary
– physician, nurse practitioner, psychologist, social worker
Disease-specific
– Breast, prostate
Consultative service
– One-time comprehensive visit
– Treatment Summary and Care Plan
Integrated Care Model
– Usually a NP or APP works within the team, or navigator
– Ongoing care
Shared Care Model
– Collaboration with primary care

60. Step 5: Select a Delivery Method
and Model
• Delivery approaches
– Integrated or free-standing/consultative?
– Individual or group?
– One-time or longitudinal?

61. Step 6: Evaluate and Respond
• Metrics
– Operational
• Participation, timeliness, satisfaction, no-show
– Financial
• Tracking of costs, reimbursement, downstream
revenue, provider caseload
– Quality
• QOL, unmet needs, wellness measures
• Quality metrics, adherence to surveillance
Adapted from: Advisory Board Company: Oncology Roundtable, 2014

62. Delivery Models & Outcomes: Case
Examples
• Integrated, dual provider model (NP, SW)
– St. Luke’s MSTI
• Group visits
– Duke University
• Nurse-led, longitudinal
– Minnesota Oncology
• Disease-specific, integrated care model
– Kansas University

63. St. Lukes Mountain States Tumor
Institute

64. Survivorship Sustainability
Investment of Resources
Estimated salary cost for 90 min SW time,
75 min NP time, and 1 hour of RHIT time
per survivorship clinic patient+ 20%
indirect cost =
$141.73

65. Survivorship Sustainability
Billed to Pt and Insurance
• Average Professional/Facility Fee
• $272.67
• Level 3 or 4 professional fee with
extended time for education and level 3 or
4 facility charge
Reimbursement
$150.69 or 55% of billed amount =
6% Return on Investment

66. Turning challenges into
opportunities…
• Evidence-based, disease-specific content
continually updated by expert faculty
• Personalized and localized content
– to optimize patient satisfaction/engagement
– to improve provider efficiency
• Registry data & EMR integration
– to improve efficiency
• Reimbursement opportunities maximized
– Visit complexity, coordination of care,
performance-based payments, downstream
revenue

67. Research on Care Plans
Survivor
PCPOncologist
Enhance communication
Coordinate care
Increase surveillance
Identify and manage long term/late effects
Encourage health monitoring and promotion

68. Do SCPs do this?
Jury is still out….

69. Survivorship Care Plans: Outcomes
• Small pilot studies of EOT visits including
SCPs
– Improved adherence to breast/cardiac surveillance1
– High patient satisfaction2,4,5
– Reduced patient concerns/unmet needs3,5
– Improved preparedness for care (survivors)3
EOT = End of treatment
1.Oeffinger, K.C., et al., 2010; 2. SA Crowley et al., 2010; 3. CH Jagielski et al., 2010;
4. Salner et al (2012) . 5. Jefford et al. (2011);

70. Results
• Breast survivors used SCP in mean of 6.9
ways
– finding resources, referrals, engaging in health
behaviors
• Reported SCPs as useful, informative,
reassuring
• Outcomes
– Improved
• perceived coordination of care
• knowledge of cancer effects and follow up care

71. Outcomes

72. But…..
• Average time to prepare and deliver SCP
– 2 ½ - 3 hours per patient
….. And…….

73. Survivorship Care Plans: RCTs
• Grunfeld et al 2012
– n = 408 BrCA survivors
– no improvement in cancer-related distress
• Hershman et al 2013 2
– n = 126 BrCA survivors
– No improvement in distress, concerns
– Decreased cancer worry
• Brothers et al 2012
– 121 GYN cancer survivors, randomized to SCP vs usual care
– Both groups rated their care highly, with no difference between
arms
• Dutch ROGY Trial of an automated SCP in GYN-Onc
– Mixed results re: patient satisfaction with information and care
1. Grunfeld et al., 2011. 2. Hershman et al., 2012. 3. Brothers et al. 2012; 4. Kim A.H. et al., 2012; Nicolaije et al.,
2015.

74. SCP trials to date: Limitations
• Sample selection
– Who benefits?
• Intervention design
– SCP content, timing
– Process of delivery
• Outcome measurement
– Linkage of outcomes assessed to intervention
content
– Relevance of outcomes selected
Stricker, Jacobs, & Palmer (2012)

75. SCP Research:
Other Challenges
• Sample issues
– Cross contamination in RCTs
• Intervention design
– Concordance of content with standards
– Limited guidance on best processes
• Outcome measurement
– Selection of outcome variables
– Limited availability of relevant metrics
Stricker, Jacobs, & Palmer (2012)

76. SCP research:
Solutions and needs
• Innovation in intervention
– IT-facilitated solutions
– Personalized SCPs
– Longitudinal approaches
• Methodologic approaches
– Metrics for examining concordance
• Link content to outcomes
– Outcome metric development
• Repositories and knowledge sharing

77. Overall Conclusions
• Systematic yet personalized approaches are
needed to improve quality care in survivorship
– Survivorship care plans are a tool to support overall
programmatic approaches
– Infrastructure and technology solutions needed to
maximize reach and impact
• Use a stepwise approach to development &
implementation
• Additional research needed to document best
models, outcomes, and value
– Contribute to these efforts through careful programmatic
evaluation

78. carevive.com
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