Dr. Carrie Stricker attended last month's Arizona Cancer Survivorship Care Plan Summit in Phoenix Arizona. The summit was a joint effort between the Arizona Cancer Coalition , the Arizona Department of Health Services, and the Susan G. Komen® Central and Northern Arizona.
Comprehensive Cancer Control (CCC) Programs work in their community to promote healthy lifestyles and recommended cancer screening, educate people about cancer symptoms, increase access to quality cancer care, and enhance cancer survivors' quality of care. The Arizona Department of Health Services developed the Arizona Cancer Coalition for dedicated individuals, professionals, and cancer survivors to address the priorities outlined in the Arizona Cancer Control Plan. These priorities include prevent cancer, detect cancer early, elevate cancer treatment, galvanize quality of life/survivorship care networks, and catalyze research.
Susan G. Kamen® Central and Northern Arizona is one of 120 Affiliates around the world dedicated to combating breast cancer at every front. Its service area encompasses all of central and northern Arizona, including Apache, Coconino, Gila, La Paz, Maricopa, Mohave, Navajo, Pinal and Yavapai counties. Through events like the Susan G. Kamen Phoenix Race for the Cure®, the Affiliate has invested more than $26.4 million in local breast health and breast cancer awareness projects in central and northern Arizona, and breast cancer research.
This summit served as a forum for clinicians, nurses, program planners, and public health professionals within Commission on Cancer (CoC) accredited hospitals to learn about survivorship care plans and address the implementation of standard 3.3 of CoC accreditation.
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Survivorship Care and Care Plans: Transforming Challenges into Opportunities
1. Survivorship Care and Care Plans:
Transforming Challenges into
Opportunities
Carrie Tompkins Stricker, PhD, CRNP, AOCN®
Chief Clinical Officer
On Q Health, Inc.
Oncology Nurse Practitioner
Abramson Cancer Center
University of Pennsylvania
3. Objectives
• To overview the current and evolving
status of cancer survivorship care delivery
in the U.S.
– Gaps, goals, challenges, models, & care
plans
• To discuss a step-wise approach to
implementing SCPs in your center
• To highlight innovation & expand vision
and scope of survivorship care delivery
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
6. Cancer Survivorship Care
Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in
Transition. The National Academies Press: Washington, D.C.
7. IOM’s Essential Components Of
Survivorship Care
• Prevention of recurrent and new cancers, and of other late
effects
• Surveillance for cancer spread, recurrence, second cancers;
and medical and psychosocial late effects
• Intervention for consequences of cancer and its treatment,
for example: medical problems; symptoms; psychological
distress experienced by cancer survivors and their
caregivers; and concerns related to employment, insurance,
and disability
• Coordination between specialist and primary care providers
to ensure that all of the survivor’s health needs are met.
10. New Models of Survivorship Care are
Needed: Further Rationale
• 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.
11. 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.;
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
» Wu & Harden, Cancer Nurs 5/14/14 epub ahead of print
13. Survivors experience numerous
under-managed symptoms
• N = 158 diverse
survivors (M = 4.1
years from Dx)
• >95% experience > 1
symptom
– Average = 10 symptoms
• Symptoms were
undermanaged
– Only 8% were referred to
supportive care services
Palmer, Jacobs, Mao, & Stricker (2012).
14. Supportive Care Needs of Survivors
Inadequately Addressed
•n = 3,129 diverse cancer survivors
15. Implications of Survivors Unmet
Needs
• PATIENT: Negative health outcomes
– Two times greater risk of death in depressed
cancer survivors
– Symptoms = primary cause of ED visits
• SYSTEM: Cancer center loss of market
share
– Dissatisfied survivors may seek care elsewhere
– Downstream revenue loss
– Greater population health costs
Mois et al, 2013, Mayer et al., 2011; The Advisory Board Co. Oncology Roundtable, 2014
16. 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 quality
- Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in
Transition. The National Academies Press: Washington, D.C.;
- Grunfeld & Earle, 2010.
17. 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.
18. 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
20. 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
management of secondary health issues &
cancer recurrence
21. 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
– Do not communicate well with one another
- 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.
22. Oncologist Workforce Shortage
Looming
Erikson et al., ASCO Workforce Report, JOP, 2007
14 % increase
48 % increase
Gap of 9.4-15.0 million visits
68% of oncologist’s visits are for care of patients
> 1 year from diagnosis
23. Opportunity
• Improve the ability of oncologists to
provide care to cancer patients with
greatest need
• System ROI:
– Increase new patient volume and associated
revenue
24. Challenge
• Oncologists often want to maintain control
& do not communicate
• Survivors are in limbo- who does what?
• PCP’s are not prepared
•24
McCabe, JCO: 2013
Grunfeld , JCO; 2006, 2011
Cheung, JCO; 2009, 2010
Del Giudice, JCO; 2009
25. 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
26.
27. From Challenge …
To Opportunity
• Oncologists often want to maintain control &
do not communicate
– 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!!!
•27
McCabe, JCO: 2013
Grunfeld , JCO; 2006, 2011
Cheung, JCO; 2009, 2010
Del Giudice, JCO; 2009
Nekhlyudov, JCO; 2009
29. 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).
31. Survivorship Care Plans (SCPs):
Mandates
• Commission on Cancer (CoC)
– 10% of all cancer survivors by January 2015
– 25% by January 2016; 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 this year
– 100% in 2016
– Delivery by 6 months following treatment
33. ASCO Clinical Expert Statement
on Survivorship Care Planning
• Key assumptions re: SCPs
– Two part tool: treatment summary & care plan
– SCP should
• Be simple, clear, understandable
• Identify who is responsible for outlined actions
• Be given to those completing active treatment and NED
• 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.]
34. 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
35. … 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
36. How to accomplish all this?
• Six steps to create treatment summaries
and survivorship care plans
Adapted from: Advisory Board Company: Oncology Roundtable, 2014
37. 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
38. Case Example: Start Small
• Breast Survivors Clinic, Abramson Cancer,
University of Pennsylvania
– Consultative model
39. Step 2: Choose or Build a
Template
Step 3: Identify data sources
40. Step 2: Choose or build a template
• Understanding and weighing options
– Freeware
– Homegrown template(s)
– Commercial software
41. Step 2: Choose or build a template
• Understanding and weighing options
– Freeware
• Least automation; Greatest staff time
• Variable degree of content maintenance
• No population management
– Commercial software
• Up front cost variable
• Potential for long term cost savings
– Automation, tailoring, content maintenance, population
management
– Homegrown template(s)
• Up-front staff/system investment
• Ongoing maintenance
42. SCP Options
Template Data Entry Configurable/l
ocalized
Format Other
considerations
ASCO Manual Manually Word, Excel
Some EMR
www.asco.org
Journey Forward Manual No Web-based Lengthy patient
summary
LIVESTRONG Manual No Downloadable
program
CNExT interface
Homegrown Variable; some
with partial
automation
Yes Variable, some
built into EMR
High upfront costs;
ongoing costs for
maintenance of
content & IT
Commercial Degree of
automation
variable
Yes Variable Higher automation
than other options;
Degree of tailoring &
content Mx variable
46. 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
• Commercial
– Hartford Healthcare; 2014 transition from Equicare
to On Q Care Planning System in
• Homegrown
– Fox Chase Cancer Center
• 140 templates in EPIC developed over year(s)
• High resource consumption to develop & maintain content,
challenges with implementation
*Mayer et al, 2014
47. 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
48.
49.
50. Step 3: Identify data sources
• Survivor identification and tracking
• Treatment summary data sources
• Care plan content
51. 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
52. SCP Data sources: Case examples
• Treatment summary data sources
– EHR: Carbone Cancer Center, UW
– Registry: Piedmont, Virtua w/On Q Health, Inc.
• Survivor identification and tracking
– St. Luke’s MSTI
– Fox Chase Cancer Center
• Care plan content
– Guidelines, peer-reviewed evidence
– Provider consensus?
– Resources and education
53. Challenges of SCP delivery:
Data/Content
• Populating treatment summary is difficult and
time consuming
– Data in many places, not discrete
• 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
56. 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
57. Step 5: Select a Delivery Method
and Model
• Models of care
• Approaches to delivery
58. Evolving Survivorship Care Models
• Multidisciplinary
– physician, nurse practitioner, psychologist, social worker
• Disease-specific
– Breast, prostate
• Disease-specific
– One-time comprehensive visit
– Treatment Summary and Care Plan
• Disease-specific
– Usually a NP or APP works within the team, or navigator
– Ongoing care
• Disease-specific
– Collaboration with primary care
59. Step 5: Select a Delivery Method
and Model
• Delivery approaches
– Integrated or free-standing/consultative?
– Individual or group?
– One-time or longitudinal?
61. 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. 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
64. 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
65. SCP models: Case Example 2
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-disciplinary providers (SW, PT, nutrition)
available if desired
Outcome data:
– < time to available appt (29.4 to 26.7 days)
– 115 new openings per year
Trotter K. et al., 2009.
66. SCP models: Case Example 3
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% valued visit)
– Prevalent symptom concerns
– Cost/resource data not reported
*EOT = End of treatment
O’Brien and Stricker (2014).
68. Survivorship care plans:
A multi-center evaluation
• LIVESTRONG Survivorship Center of
Excellence Network study
– Breast cancer survivorship care plan delivery
• 2 phases
– Phase I: Describe process and content of SCP delivery
across academic/community sites
– Phase II: Explore outcomes of a standardized breast
cancer SCP
69. Program Evaluation
• Overall Goals
– To evaluate process & explore outcomes of
breast cancer (BC) survivorship clinic visits
(incl. care plans)
• Study Design
• Phase I – Descriptive (n = 13 sites)
– Process variables of SCP delivery in current practice
• Phase II - Pre-test/post test design
– Sample of n = 200 BC survivors at 8 LIVESTRONGTM
Centers of Excellence (COE)
– Outcomes of delivery in a single arm study
PI: Carrie Stricker, PhD, RN; Co-Is: Drs. Palmer, Jacobs (UPenn), Risendal (U.Colorado)
- Funded by the Lance Armstrong Foundation/LIVESTRONGTM
70. Phase I - Process:
High resource burden, low reach
• Model/approach
– Visit provider: 76% NP, 22% nurse, 2% MD
• Reach
– Most sites (2/3) served <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.
71. Phase I:
Content: Narrow focus
• Evaluated breast cancer SCPs within 13
academic & community cancer centers in
LIVESTRONG network
• N = 65 actual SCPs evaluated
– Content areas addressed well
• Basic disease/treatment info
• Potential toxicities/late effects
• Breast cancer surveillance, genetic testing recs
Stricker, C.T., Jacobs, L.A., Risendal, B. et al. Journal of Cancer Survivorship (2011)
72. Phase I: 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)
73. Phase II: Study measures
• Outcome measures
– Symptoms, communication/management
– Referrals/recommendations generated
– Health service utilization, incl. surveillance
– Perceived quality/coordination of care
– Health behaviors
75. 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
77. The On Q Care Planning System (CPS)™
allows cancer teams to deliver personalized care
plans to patients in real-time, across the cancer
care continuum, including survivorship care plans
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
Solution: On Q Health, Inc.
84. •On Q
•Facility
Tumor Registry Integration
Medical
Record
1. Abstract patient
records
2. Create registry
report
3. Import registry
report
4. Map registry codes
and technical
jargon to patient
friendly language
5. Review, modify,
and augment
registry data
6. Apply evidence-
based guidelines
7. Generate
Survivorship Care
Plan, including
Treatment
Summary
Tumor
Registry
On Q
Data Services
On Q
Survey
On Q
Rules
On Q
Care Plan
TS + SCP
Import
Report
Registry
Report
•1 •2
•3•4•5
•6 •7
86. Data Reporting & Analytics
• Cancer center referrals made/completed
• Navigation reports for SCP follow-through
• Patient surveillance and health behaviors
• Patient-reported outcomes for institutional
QI and, in aggregate, to inform survivorship
guidelines
87. Referrals Generated by On Q
0%
5%
10%
15%
20%
25%
Referrals by Symptom/Issue
•NEW PREZI
N = 67 breast cancer survivors; mean = 5.9 referrals per patient
88. • Also provide personalized distress
management and supportive care plans
– Management of existing symptoms and
psychosocial care issues
– Personalized healthy living advice
•CONFIDENTIAL AND PROPRIETARY
On Q CPS™ Care Plans
96. 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
97.
98. Survivorship Care
• It’s more than just treatment summaries
and care plans
– SCP’s are just a tool to facilitate care
– Care models must target overall population
health, care coordination, and patient
engagement for maximal impact
99. Overall Conclusions
• Significant gaps in survivorship care continue
to be prevalent
• Systematic yet personalized approaches are
needed to improve quality
– Survivorship care plans are a tool to support overall
programmatic approaches
– Infrastructure and technology solutions needed to
maximize reach and impact
• Efforts to improve survivor population health
must begin at diagnosis
• Additional research needed to document best
models, outcomes, and value
100. “ Being cancer-free is not the same as
being free of cancer”
Julia Rowland, PhD
Director, NCI Office of Cancer Survivorship