setting up for survivorship success
DESCRIPTION
Mandi Pratt-Chapman, MAChi H. Kim, MDLorenzo Norris, MDTRANSCRIPT
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: [email protected]
Chi H. Kim, MDInternist, Thriving After Cancer ProgramE-mail: [email protected]
Lorenzo Norris, MDDirector, Survivorship Center Psychiatric ServicesE-mail: [email protected]
caSNP and NCSRC Offerings: www.gwumc.edu/casnp