Setting Up for Survivorship Success

Mandi Pratt-Chapman, MAChi H. Kim, MD

Lorenzo Norris, MDThe George Washington University Medical Center

Learning Goals

• Explain why navigation and survivorship programs are necessary

• Articulate new CoC standards for patient navigation and survivorship

• Identify key steps in establishing a navigation or survivorship program

• Describe program challenges and successes of a multi-disciplinary clinical survivorship program

• Identify methods for managing the psychosocial needs of patients and caregivers

Defining Patient Navigation

“Patient navigation is individualized assistance offered to patients, their families, and caregivers to help overcome barriers to care, whether through the health care system or the environment, and facilitate timely access to quality medical and psychosocial care from before…diagnosis…through all phases of the cancer experience.”

- Commission on Cancer

Defining Survivorship

Why all the fuss?

• Fragmented health care system• Growing population of survivors• Focus on patient-centered issues• Patient expectations• Need to maximize health outcomes• Barriers to communication

Estimated Number of Survivors

0.0

0.5

1.0

1.5

2.0

2.5

0 to <5 5 to 10 10 to <15 15 to <20 20 to <25 ≥ 25

Peop

le in

mill

ions

Years from Diagnosis

Males

Females

Listening to SurvivorsLance Armstrong Foundation LIVESTRONGTM Poll (N=1020)• 53% reported secondary health problems

– Chronic Pain (54%)– Sexual dysfunction (58%)– Relationship difficulties– Fertility issues– Fear of recurrence– Depression– Financial & job related concerns

• 49% reported– Non-medical cancer related needs not met

Wolff SN, Hichols C, Ulman D, et al. Survivorship: an unmet need of the patient with cancer – implications of a Survey of the Lance Armstrong Foundation (LAF) [abstract]. Proc Am Soc Clin Oncolo 2005; 23(suppl):6032.

Listening to SurvivorsLance Armstrong Foundation LIVESTRONGTM Poll (N=1020)• 70% reported– Oncologists did not offer support in dealing with health

problems secondary to cancer• Only 30% reported– Oncologists willing to talk about secondary health

problems• Did not have the adequate experience or information to

provide guidance

Wolff SN, Hichols C, Ulman D, et al. Survivorship: an unmet need of the patient with cancer – implications of a Survey of the Lance Armstrong Foundation (LAF) [abstract]. Proc Am Soc Clin Oncolo 2005; 23(suppl):6032.

Listening to Survivors

ACS Study of Cancer Survivors Poll (N=752)• Six different cancer sites• 3-11 years post-diagnosis• Information needs– Overall quality of information received

• 38% rated the information provided as fair to poor

– Information about long-term side effects• 36% rated the information provided as fair to poor

Report from ACS Studies of Cancer Survivors, 2008

Survivorship Challenges

• Quality of life (QOL)• Late effects• Long-term effects

Top Five Concerns

Source: American Cancer Society Studies of Cancer Survivors.

Fearful Illness Will Return

Fatigue/Loss of Strength

Concern about Relapsing

Fears about the Future

Sleep Difficul-ties

0

10

20

30

40

50

60

70

1 Year 3 Years 6 Years 11 Years

Why Now?

• Institute of Medicine• President’s Cancer Panel• New CoC Standards for Survivorship and

Patient Navigation by 2015• ACCC Program Guidelines• CDC Survivorship Priority / NCSRC

National Cancer Survivorship Resource Center

• NCSRC is a collaboration between ACS and the George Washington University Cancer Institute (GWCI), funded by a 5-year cooperative agreement between ACS and the Centers for Disease Control and Prvention.

• Funding began on September 30, 2010, and will continue through September 29, 2015

NCSRC Goals

• Gap analysis• Surveillance analysis• Performance indicators and criteria• Survivorship navigation • National collaborations• Clinical guidelines• Training• Policy recommendations

New CoC Navigation Standard

• Conduct assessment of barriers to care for cancer patients

• Establish a patient navigation process to address barriers– Can be on site or by referral

• Cancer committee evaluates / reports on process annually– Health disparities identified– Navigation process– Population(s) served; barriers identified in needs assessment– Activities and metrics (outcomes/outputs)– Areas for Quality Improvement; future directions

New CoC Survivorship Standard

• Develop & implement a process to disseminate survivorship care plans for patients completing cancer treatment– SCP provided by principal provider(s) who coordinated

oncology treatment– SCP is given to patient upon completion of treatment– SCP follows minimum elements outlined in IOM Fact Sheet

for Survivorship Care Planning• Monitor, evaluate and present program annually to

cancer committee and document in minutes

Basic Elements of Survivorship Care

• Surveillance for recurrence• Screening for new cancers• Identification of interventions for

consequences of cancer and its treatment• Health promotion strategies• Coordination between oncology specialists

and primary care providers

IOM Fact Sheet: Elements of SCP• Summary of diagnostic tests, tumor characteristics,

treatment details, supportive care• Full contact information of treating institutions &

providers; Key point of contact• Schedule of screening, testing, providers• Late and long-term effects; signs of recurrence and second

tumors• Impact of cancer: relationships, sex, work, finances, etc. • Healthy behaviors • Referrals for follow-up care • Cancer-related resources and information

New CoC Psychosocial Distress Screening Standard

• Develop & implement a process to integrate & monitor psychosocial distress screening and referral for psychosocial care– Every cancer patient must be screened at least once at a

pivotal visit (diagnosis, transitions during treatment or transition off treatment)

– Methods and tools can be determined by institution• Aims to incorporate screening for distress into

standard oncology care• Referral can be on-site or to off-site care

caSNP Executive Training

Next training: Spring 2012Information: www.gwumc.edu/casnp

caSNP Executive Training

• Organizational Description• Program Goals• Needs Assessment• Capacity Assessment• Market Analysis• Service• Program Success / Evaluation• Lessons Learned• Change Management• Sustainability Planning

Resources

• Facing Forward: Life After Cancer Treatment (NCI): www.cancer.gov/cancertopics/life-after-treatment

• Coping with Cancer (NCI): www.cancer.gov/cancertopics/coping • National Coalition for Cancer Survivorship

The Cancer Survival Toolbox: www.canceradvocacy.org/toolbox/• NCI Office of Cancer Survivorship:

http://cancercontrol.cancer.gov/ocs/• Long-Term Follow Up Guidelines for Survivors of Childhood,

Adolescent and Young Adult Cancers – CureSearch: www.survivorshipguidelines.org

• NCCN Clinical Practice Guidelines – National Comprehensive Cancer Network: http://nccn.org/professionals/physician_gls/default.asp

Survivorship Special Editions

• Journal of Pediatric Psychology (2005)• American Journal of Nursing (2006)• Journal of Clinical Oncology (Nov 10, 2006) • The Cancer Journal (Nov/Dec 2008)• Hematology/Oncology Clinics of N America (2008)• Cancer (biennial conf suppl: 2005, 2008, late 2009)

Navigation Special Edition

• Cancer. Supplement: National Patient Navigation Leadership Summit (NPNLS): Measuring the Impact and Potential of Patient Navigation (August 2011).

Treatment Summary & Survivorship Care Plan Templates

• American Society of Clinical Oncology (ASCO): http://www.cancer.net/patient/Survivorship/ASCO+Cancer+Treatment+Summaries

• Journey Forward Care Plan Builder: www.journeyforward.org

• LIVESTRONG Care Plan Furnished by Penn Oncolink Website: www.oncolink.com/oncolife/

• NCI Community Cancer Centers Program Breast Cancer Survivorship Care Plan Website: http://ncccp.cancer.gov/NCCCP-ASCO-Breast-Cancer-Survivorship-Care-Plan.pdf

• Equicare CS customized survivorship care planning IT solution - requires up front investment and maintenance fees: http://www.cogenths.com/Default.aspx?tabid=140

Thriving After Cancer Program

Chi H. Kim, MDAssistant Professor of Medicine

Organizational Description

• The GW Cancer Institute is a comprehensive oncology center dedicated to addressing cancer disparities in the DC area.– George Washington University Hospital– GW Medical Faculty Associates– GW Cancer Institute

Needs Assessment

• Children’s National Medical Center were seeing returning survivors well into adulthood

• Need for age-appropriate care• Need to capture patients lost to follow-up• IOM directive: – Prevention of new cancers/late effects– Surveillance of cancer spread, recurrence, 2nd cancers– Intervention for long-term and late effects– Coordination among care providers

What Is TAC?

• TAC = Thriving After Cancer

• COLLABORATECOLLABORATECOLLABORATE

What Is TAC?

• Multidisciplinary Survivorship Clinic– Nurse Practitioner-led– Centered on Internal Medicine– Consult with Pediatric Oncologist– Patient Navigation by Social Worker– Mental health assessment by Psychiatric resident– Dietitian consultation and plan development

• Personalized Exercise Program (TACfit)• Survivorship Seminars (quarterly)

Program Goals

• Establish survivorship as distinct phase of care• Improve survivor post-treatment follow up to

improve QOL and outcomes• Provide survivorship care plans to all patients • Promote healthy behaviors• Improve communication across providers

Survivorship Care Plan

Survivorship Care Plan

TAC Services Provided

• Treatment summary and care plan created• Psychosocial assessment completed• Surveys sent to survivors• Discussion of visit flow

• Follow-up and adherence to recommendations• Communication with patient• Communication with PCP• TACfit• Survivorship seminars

• Pre/post clinic provider huddles• Multidisciplinary providers meet with patient: oncology, internal medicine, psychiatry, social work navigator, dietitian• Review summary/care plan with patient

Visit

Post-VisitPre-Visit

Capacity Assessment

• Strengths– Academic medical center with educational mission =

free medical resident and graduate student labor– Passionate healthcare providers

• Weakness– Still struggling with some late adopters

Capacity Assessment

• Opportunities– No adult survivorship clinic in DC– Secured grant support for seed funding

• Threats– Financial return on investment may be insufficient

to cover program costs• Need to value program in more than just financial ways

Market Analysis• Population served– Currently pediatric survivors age 18+ and two or more

years out of treatment– Expanding to breast and prostate survivors in 2011

• Competitors– One institution has a breast survivorship program– No other adult survivorship clinics in DC

• Potential partners– CNMC, external PCPs, other oncologists

• Marketing opportunities– Leverage navigation and survivorship programs for

marketing overall oncology and primary care services – Patient word-of-mouth about quality of care

Evaluation Approach

• Tracking logs• Validated tools• Survivorship Care Plans• Self-report surveys

Evaluation Results• Survivorship Care Plans: 99 survivors provided with

SCP’s since August 2010

• Sub-specialists: 91% referred to GWU MFA system with average of 3 referrals per patient

• QOL: 58% of survivors received free nutrition consultation; 15% received tailored exercise plan

• Compliance: 94% of patients followed up on at least one of their referrals; 60% patient follow-up rate for all referrals

Top Program Successes

• Communication and shared educational experience within the TAC provider group

• Appropriate health care utilization• Linking survivors with vested Primary Care

doctors• Increased educational opportunities

(curriculum)• “Mystery” patients returning

Top Program Successes

But most importantly:

The survivor experience

The Patient Experience

• 44-year-old brain tumor survivor• Late effects: seizures, memory, weakness,

depression• No health insurance• No regular healthcare• Not taking medications

Navigation Outcome: Access to care

The Patient Experience

• 18-year-old brain tumor survivor• Hearing loss• Cognitive late effects• College assistance

Navigation Outcome: Access to care; education assistance

Best Practices

• Start where you are

• Find an internal champion

• Get input from all stakeholders: patients, providers, and administrators

• Make a program plan

Best Practices

• Set realistic goals

• Evaluate and improve (it’s a work in progress)

• Don’t reinvent the wheel

• Collaborate!

Sustainability: TAC CostsStaff Costs Funding Source Other Costs Funding Source

Director of Survivorship (10% FTE) Grant Lab and other tests Billable

Patient Navigator (50% FTE) Grant 3rd-party evaluation Grant

Nurse Practitioner (25% FTE) Grant Facility rental Clinic Overhead

TAC Internal Medicine Physician (5% FTE) Grant Facility utilities Clinic Overhead

TAC Intern Medicine Physicians Billable Printing & copying charges Operational Funds

Pediatric Oncologist (5% FTE) Grant Food for events Donated

Psychiatrist (supervision of residents; 5% FTE) Grant Patient health education seminar costs Donated

Psychiatric Oncology Residents Training Funds Conference presentations Operational Funds

Clinical Dietitian (10% FTE) Grant Patient intake and follow-up tools No Cost

Exercise Physiologist Training Funds Marketing materials Operational Funds

Clerical staff at TAC Clinic Clinic Overhead

Nurses at TAC Clinic Clinic Overhead

Referrals – non-TAC subspecialists Billable

GW Survivorship Center Psychiatric Services (SCPS)

Lorenzo Norris, MDDirector of Consult Liaison Psychiatry

SCPS Mission Statement

• Provides targeted psychiatric services to help patients transition through the cancer care continuum.

• Interventions integrated with the cancer care patients are already receiving at GW Medical Center; enhance the patient’s experience at GW.

• Resource for education in the area of psycho-oncology; collaboration with colleagues in other disciplines to start new multidisciplinary initiatives that address the needs of cancer survivors.

Growth of a Service

2006 solo consultant

2008 Chapman arrives

2009 COH staff of 4

2011 Staff of 12 people

SCPS Program Goals

• Improve survivor post-treatment QOL especially in the area of distress.

• Provide psychiatric support to all GW Survivorship programs.

• Train and teach residents applications of psycho-oncology to apply to the field of cancer survivorship

• Increase collaboration between various providers of survivorship care.

National Needs Assessment

• Depending on cancer site, up to 40 % of survivors experience some form of distress.

• Clinicians feel ill-equipped to engage in long visits that delve into emotional issues

• Multiple organizations have recommended distress be formally assessed

• Psychiatric services can be expensive, not covered by insurance and difficult to obtain in a timely fashion

GW Needs Assessment

• Patients for the most part happy and treated very well

• Staff NEED to maintain control of patient care; You must gain their trust

• Staff fall short in highest risk populations• Staff are humanistic by nature and want

support• HIGH DEGREE OF FRAGMENTATION IN 2006

GW Needs Assessment

Less Fragmentation

Treatment for High Risk

More Support

Capacity Assessment

• Strengths: Resident labor• Weaknesses: Re-training the workforce every

year; limited capacity• Opportunities: Collaborate with other

psychosocial departments; make SCPS a fully-funded resident site.

• Threats: Financial; maintain physician interest (we are ultimately consultants)

Capacity Assessment Five-Year Plan

CAPACITY 2013 2016Strength Returning staff Full transition of residency

to psychosomaticWeakness Flashpoint in terms of

financialInfrastructure does not support size

Opportunities NCSRC: ACS Community, GW Community

International academic

Threats Internal and getting buy-in for next phase

Developing next generation to take lead as senior faculty leave

Market Assessment

• We are serving patients predominantly in the GW-MFA system

• There is one other institution in the area with a survivorship program, but very few with a dedicated psychiatric service

• Faculty experience and specialized training in psycho-oncology combined with reduced fee services gives SCPS points of leverage in the market

Services Provided by SCPS

• Acute crisis intervention• Time-limited, focused cognitive behavioral

therapy (CBT)• Focused pharmacotherapy• Transitional services for long term psychiatric

services• Weekly multi-disciplinary case conference

open to GW faculty.

Strategies to Manage Psych Needs Risk Stratification of Needs

HighSCPS

MediumStandard

Survivorship Care Plan

Nurse Practitioner

Social Work

Acute Crisis

CBT/Medication

Navigator-led Support Group

Coordinated Navigation

Strategies to Manage Psych Needs Why Risk Stratification?

• Most distress only requires guidance and support from services as usual

• Trying to institute full psychiatric services for all patients is a recipe for disaster

• This approach encourages involvement of all staff and changes the culture

Strategies to Manage Psych Needs Challenge of Distress Screening

• Use Distress Thermometer and get ahead of the curve

• Develop your site-specific cut off score and referral system

• Before you start screening have two types of referral available– Emergency Crisis– Standard Pharmacotherapy that accepts insurance

Strategies to Manage Psych Needs Challenge of Distress Screening

Signs and Symptoms of Distress Quick Formula for Referral

Distress score 5+

3 or more emotional symptoms

Referral

Know Adjunctive Providers

PROVIDER ROLEPsycho-oncologist Specialist in cancer and specific issues;

Usually has advanced training in addition to psychiatrist

Psychiatrist MD with training in recognizing normal and abnormal mental function

Neuropsychologist Specialist who is expert in cognitive function; Frequently perform neuro-psych testing

Chaplain Spiritual practitioner trained in treating spiritual distress, and other matters of faith

Strategies to Manage Psych Needs

• CBT or combined CBT with medication management.

• DON’T WORK ALONE• Therapy is a strength of our program• Future directions– Family Therapy– Couples Therapy– Palliative Existential Psychotherapy

Program Successes

• 40 patients treated with either combination of CBT or medication management.

• 8 crisis interventions for suicidal patients• 10 residents and six fellows given in-depth training

in field of psycho-oncology and survivorship• Multiple presentations, including at APA• Dedicated issue of Psychiatric Annals; case reports

focused on psycho-oncology and survivorship• Results of patient survey study 2011

Lessons Learned

• Be very, very patient• Focus on what you do best• Champions may bring the spark, but the TEAM

creates the flame!• Reliability is paramount• Know your providers• Balance planning with a proactive approach

Sustainability

• As Survivorship at GW grows so will the need for psychiatric services

• Chief sustainability issue moving forward is funding for residents

• Programs grow and it’s very important to recognize when you are at a transition point.

Contact Information

Mandi Pratt-Chapman, MAAssociate Director, GW Cancer Institute202-994-4034E-mail: canmpc@gwumc.edu

Chi H. Kim, MDInternist, Thriving After Cancer ProgramE-mail: chkim@mfa.gwu.edu

Lorenzo Norris, MDDirector, Survivorship Center Psychiatric ServicesE-mail: lnorris@mfa.gwu.edu

caSNP and NCSRC Offerings: www.gwumc.edu/casnp