Survivorship Care and Care Plans: Transforming Challenges into Opportunities

Carrie Tompkins Stricker, PhD, CRNP, AOCN®

Chief Clinical OfficerOn Q Health, Inc.

Oncology Nurse PractitionerAbramson Cancer CenterUniversity of Pennsylvania

Disclosures

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

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

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

Estimated and projected number of cancer survivors in the United States from 1977 to 2022

by years since diagnosis

• de Moor J S et al. Cancer Epidemiol Biomarkers Prev 2013;22:561-570

• ©2013 by American Association for Cancer Research

Cancer Survivorship Care

Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in

Transition. The National Academies Press: Washington, D.C.

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.

Why a special focus on cancer survivorship care?

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

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.

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.;

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

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).

Supportive Care Needs of Survivors Inadequately

Addressed

• n = 3,129 diverse cancer survivors

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

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 inTransition. The National Academies Press: Washington, D.C.; - Grunfeld & Earle, 2010.

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.

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

Over-use of unnecessary care

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

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 inTransition. The National Academies Press: Washington, D.C.

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

Opportunity

• Improve the ability of oncologists to provide care to cancer patients with greatest need

• System ROI: – Increase new patient volume and

associated revenue

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: 2013Grunfeld , JCO; 2006, 2011Cheung, JCO; 2009, 2010

Del Giudice, JCO; 2009Nekhlyudov, JCO; 2009

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

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: 2013Grunfeld , JCO; 2006, 2011Cheung, JCO; 2009, 2010

Del Giudice, JCO; 2009Nekhlyudov, JCO; 2009

Identifying Potential Solutions

Institute of Medicine (IOM) report, 2005

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).

SURVIVORSHIP CARE PLANS: MANDATES & STANDARDS

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

10/14: ASCO updates & CoC endorses required SCP

components

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.]

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

… 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

How to accomplish all this?

• Six steps to create treatment summaries and survivorship care plans

Adapted from: Advisory Board Company: Oncology Roundtable, 2014

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

Case Example: Start Small

• Breast Survivors Clinic, Abramson Cancer, University of Pennsylvania– Consultative model

Step 2: Choose or Build a Template

Step 3: Identify data sources

Step 2: Choose or build a template

• Understanding and weighing options– Freeware– Homegrown template(s)– Commercial software

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

SCP OptionsTemplate Data Entry Configurable/

localizedFormat 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

Journey Forward

Journey Forward

LIVESTRONG Care Plan

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

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

Step 3: Identify data sources

• Survivor identification and tracking• Treatment summary data sources• Care plan content

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

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

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

Step 4: Assign Staff Responsibilities

Step 5: Select a Delivery Method

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

Step 5: Select a Delivery Method and Model

• Models of care• Approaches to delivery

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

Step 5: Select a Delivery Method and Model

• Delivery approaches– Integrated or

free-standing/consultative?– Individual or group?– One-time or longitudinal?

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

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

St. Lukes Mountain States Tumor Institute

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

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

SCP models: Case Example 2Group 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.

SCP models: Case Example 3Minnesota 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).

The KUMC/KUCC Model for Delivering Survivorship Care

67

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

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

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.

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)

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)

Phase II: Study measures

• Outcome measures– Symptoms,

communication/management– Referrals/recommendations

generated– Health service utilization, incl.

surveillance– Perceived quality/coordination of care– Health behaviors

Results

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

Personalized care across the cancer continuum

• Innovative solutions are needed

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.

79• CONFIDENTIAL AND PROPRIETARY

Cancer Experts Are Our Content Developers

• Red = MDs Blue = Nurses

• CONFIDENTIAL AND PROPRIETARY

On Q Content Partners

Professional Society Guidelines Advocacy Group Patient Education

On Q Survivorship Care Plans

• CONFIDENTIAL AND PROPRIETARY

Patient friendly

treatment summary

Automated, Personalized Care Plans

• On Q

• Facility

Tumor Registry Integration

MedicalRecord

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

TumorRegistry

On QData Services

On QSurvey

On QRules

On QCare Plan

TS + SCP

ImportReport

Registry

Report• 1 • 2

• 3• 4• 5

• 6 • 7

EMR Integration

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

Referrals Generated by On Q

Anxiety/depression CIPN Cognitive dysfunction Fatigue/sleep Genetic counseling Lymphedema Pain Sexual dysfunction Weight issues0%

5%

10%

15%

20%

25%

Referrals by Symptom/Issue

• NEW PREZI

N = 67 breast cancer survivors; mean = 5.9 referrals per patient

• 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

• 89• CONFIDENTIAL AND PROPRIETARY

On Q CPS™: Psychosocial Assessment

is linked to….

• 90

… Psychosocial Care Management

• CONFIDENTIAL AND PROPRIETARY

Localized referrals and support for psychosocial distress

Proactive patient assessment

• CONFIDENTIAL AND PROPRIETARY

is linked to….

• Pain

… Personalized, evidence-based supportive care management

• CONFIDENTIAL AND PROPRIETARY

Customer TestimonialDeb Walker, APRN, Hartford Healthcare

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

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

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

“ Being cancer-free is not the same as being free of cancer”

Julia Rowland, PhDDirector, NCI Office of Cancer Survivorship