6. 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
8. Listening to Survivors Lance 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 SocClinOncolo 2005; 23(suppl):6032.
9. Listening to Survivors Lance Armstrong Foundation LIVESTRONGTMPoll (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 SocClinOncolo 2005; 23(suppl):6032.
10. 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
17. NCSRC Goals Gap analysis Surveillance analysis Performance indicators and criteria Survivorship navigation National collaborations Clinical guidelines Training Policy recommendations
18. 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
19. 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
20. 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
21. 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
22. 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
24. caSNP Executive Training Organizational Description Program Goals Needs Assessment Capacity Assessment Market Analysis Service Program Success / Evaluation Lessons Learned Change Management Sustainability Planning
25. 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 SurvivorshipThe 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
26. 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 confsuppl: 2005, 2008, late 2009)
27. Navigation Special Edition Cancer. Supplement: National Patient Navigation Leadership Summit (NPNLS): Measuring the Impact and Potential of Patient Navigation (August 2011).
28. 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
30. 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
31. 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
32. What Is TAC? TAC = Thriving After Cancer COLLABORATE COLLABORATECOLLABORATE
33. 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)
34. 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
49. 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
50. 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
51. 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
53. 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
54. 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
56. 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
57. The Patient Experience 18-year-old brain tumor survivor Hearing loss Cognitive late effects College assistance Navigation Outcome: Access to care; education assistance
58. Best Practices Start where you are Find an internal champion Get input from all stakeholders: patients, providers, and administrators Make a program plan
59. Best Practices Set realistic goals Evaluate and improve (it’s a work in progress) Don’t reinvent the wheel Collaborate!
61. GW Survivorship Center Psychiatric Services (SCPS) Lorenzo Norris, MD Director of Consult Liaison Psychiatry
62. 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.
63. Growth of a Service 2011 Staff of 12 people 2009 COH staff of 4 2008 Chapman arrives 2006 solo consultant
64. 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.
65. 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
66. 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
68. 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)
70. 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
71. 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.
72. Strategies to Manage Psych Needs Risk Stratification of Needs High SCPS Medium Standard Acute Crisis Social Work CBT/Medication Survivorship Care Plan Nurse Practitioner Navigator-led Support Group Coordinated Navigation
73. 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
74. 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
78. 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
79. 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
80. 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
81. 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.
82. Contact Information Mandi Pratt-Chapman, MA Associate Director, GW Cancer Institute 202-994-4034 E-mail: canmpc@gwumc.edu Chi H. Kim, MD Internist, Thriving After Cancer Program E-mail: chkim@mfa.gwu.edu Lorenzo Norris, MD Director, Survivorship Center Psychiatric Services E-mail: lnorris@mfa.gwu.edu caSNP and NCSRC Offerings: www.gwumc.edu/casnp
Editor's Notes
-Rapidly growing population of survivors due to advances in diagnosis and treatmentApproximately 12 million cancer survivors in U.S.Predictions of 20 million by 202062% of adults diagnosed with cancer today can expect to be alive in five years75% of pediatric survivors alive after 10 years -Despite advances, some Americans have not fully benefited from this progress - particularly the poor and underserved - as evidenced by their high cancer incidence, mortality, and lower survival.-Healthcare system is an intricate network that can be difficult and frustrating to navigate-As a result, individuals slip through the cracks, often, underserved individuals-Patient navigation prevents this by identifying and eliminating real and perceived barriers to care
Individuals who are 5 or more years beyond diagnosis. (F. Mullan)Anyone who has been diagnosed with cancer through the balance of his or her life. (NCCS)Including friends, family members and caregivers. (NCI)Programmatic definition: after active treatment
-Greater emphasis on patient-centered issues by the medical community for quantity AND quality of life-Increasing expectations by patients for good quality of life-Survivors often do not know how to maximize their wellness. They may not know their risk for recurrence, second cancers or late effects or what to look for as an indicator of recurrence-There remain many barriers to communication and unmet information needs
Estimated Number of Persons Alive in the U.S. Diagnosed with Cancer on January 1, 2007 by Time From Diagnosis and Gender
6 cancer sites: Bladder, breast, colorectal, prostate, uterine, melanoma
Increasing expectations for good quality of life after cancerIncreasing identification of life challengesLate effectsOccur after treatment has been completedLong term effectsEffects that persist after completion of treatment
These survivors require appropriate long-term health care and a focused public health approach to prevent, detect, and provide early interventions for the consequences of cancer treatment.
National directives: 2003 President’s Cancer Panel Living Beyond Cancer: Finding a New Balance National Cancer Institute2004 National Action Plan for Cancer Survivorship: Advancing Public Health Strategies- CDC & Lance Armstrong Foundation2005 Institute of Medicine Report From Cancer Patient to Cancer Survivor: Lost in Transition. National Academies PressAmerican College of Surgeons Commission on Cancer (CoC), by 2015: Standard for Survivorship Care Plans Patient Navigation StandardACCC Cancer Program Guidelines“An optimal comprehensive cancer program should make available information and programs specific to survivorship issues to cancer patients and their families."
-Identify gaps in information content and delivery methods-Assess nationwide surveillance system capacity to longitudinally monitor cancer survivor outcomes-Identify performance indicators and criteria to assess effectiveness of survivorship programs-Provide survivorship navigation and support-Enhance collaborations with comprehensive cancer control coalitions to develop / disseminate evidenced-based survivorship information with emphasis on underserved-Collaborate to bridge public health, clinical, and policy communities to enhance awareness of survivorship care and define appropriate medical homes following treatment
-Identify gaps in information content and delivery methods-Assess nationwide surveillance system capacity to longitudinally monitor cancer survivor outcomes-Identify performance indicators and criteria to assess effectiveness of survivorship programs-Provide survivorship navigation and support-Enhance collaborations with comprehensive cancer control coalitions to develop / disseminate evidenced-based survivorship information with emphasis on underserved-Collaborate to bridge public health, clinical, and policy communities to enhance awareness of survivorship care and define appropriate medical homes following treatment
-All cancer populations should be included in the needs assessment-Needs assessment must guide initiatives for community outreach and psychosocial services
Diagnostic tests performed and results.Tumor characteristics: site(s), stage and grade, hormonal status, marker information.Dates of treatment initiation and completion.Surgery, chemotherapy, radiotherapy, transplant, hormonal therapy, gene or other therapies provided, including agents used, treatment regimen, total dosage, identifying number and title of clinical trials (if any), indicators of treatment response, and toxicities experienced during treatment.Psychosocial, nutritional, and other supportive services provided.Full contact information on treating institutions and key individual providers.Identification of a key point of contact and coordinator of continuing care.Follow up plan should include information on:Likely course of recovery from treatment toxicities; ongoing health maintenance/adjuvant therapyDescription and schedule of recommended cancer screening and other testing with providers listedPossible late and long-term effects of treatment and symptomsPossible signs of recurrence and second tumors.Potential impact of cancer on relationships, sexual functioning, work, parenting, and psychosocial support.Potential impact of cancer on insurance, employment, and finances; referral to counseling, legal aid, and financial assistance.Specific recommendations for healthy behaviors As appropriate: recommendations that first degree relatives be informed about their increased risk and need for cancer screening As appropriate: information on genetic counseling and testing to recommend surveillance, chemoprevention, or surgery for high risk individualsAs appropriate: information on known effective chemoprevention strategies for secondary prevention Referrals to specific follow-up care providers, support groups, and/or the patient’s primary care provider.Listing of cancer-related resources and information
Related but distinct standard that may intersect with navigation and survivorship efforts
Organizational Description: Mission, Values, Population served, how does program fit with org mission? Stakeholder buy-in, special accreditations needed?Program Goals: What do you hope to achieve? What outcomes do you expect as a result of your navigation or survivorship program.Needs assessment: What problem are you trying to solve? What is motivating the change? What are the local/national directives? What are patients tell you? Staff?Capacity Assessment: Strengths, Weaknesses, Opportunities, ThreatsMarket analysisWhat population will your navigation program serve? Who are your competitors?Who are potential partners? What are the market / marketing opportunities navigation provides to you?Service: What service do you want to provide? What assumptions are you making about why this service is needed?What specific activities will you do to accomplish your program goals?Program success/eval: How will you know when you have succeeded? How will you evaluate your success? What is important for decision-makers to know to keep the program? Track key data that will influence decision-makers!Lessons learned: at the training we look at case examples of lessons learned; you will hear about our program at GW in just a moment.Change management: How will you garner administrative buy-in and deal with those who oppose change?Sustainability planning: How will you keep your program going? Plan for this at the beginning! Align incentives of organizational mission and leadership vision with your program to optimize sustainability. Track successes that matter to leadership.
Includes survivorship navigation article.Available online now.
brings multidisciplinary clinical, research, education and outreach programs together in a comprehensive approach to cancer prevention, community outreach, screening, diagnosis, treatment, survivorship care, and psychosocial support.
Focus on infrastructure, evaluation and sustainability Provide survivorship care plans and clinical follow upTimeline:April 2010 - Key people identifiedMay-July 2010 – Role definition, clinic tools selection marketingJuly 2010 – Space secured, collaborative organizational structure developed, privileges established August 2010 – navigator hired, billing process established, first patients seen
Focus on infrastructure, evaluation and sustainability Provide survivorship care plans and clinical follow upTimeline:April 2010 - Key people identifiedMay-July 2010 – Role definition, clinic tools selection marketingJuly 2010 – Space secured, collaborative organizational structure developed, privileges established August 2010 – navigator hired, billing process established, first patients seen
No other adult clinic for survivorship in DC as of 2010.
Potential Partners: PCPs who would value a survivorship care plan to better care for long-term needs of cancer survivors under their care
Tracking logs: -Does patient have a medical home?-Did they receive a care plan?-Did they schedule visits with subspecialists recommended?Validated tools: NCCN distress thermometer, PROMIS, FACIT, Impact of Cancer Scale, CASE-C, CAHPS-Health LiteracyCare plans: Is patient following recommendations?Self-report: -satisfaction with navigation & clinical process-health knowledge & healthy behaviors (pre/post surveys)
78 patients seen through July 201191% had at least one referral (including labs)The average number of referrals per patient is about 3 (2.9). Of all patients: 8% had 0 referrals 17% had 1 22% had 2 15% had 3 22% had 4 19% had 5 20% had 6 1% had 7 Programs Accessed Nutrition - 58% TACfit - 15% Largest % Referrals Echo - 50% Labs - 46% Internal Med - 27% Dexa - 24% Psycho-oncology - 19% 60% of the referrals were followed-up on by the patient. 60% of psycho-oncology referrals not followed-up on.
78 patients seen through July 201191% had at least one referral (including labs)The average number of referrals per patient is about 3 (2.9). Of all patients: 8% had 0 referrals 17% had 1 22% had 2 15% had 3 22% had 4 19% had 5 20% had 6 1% had 7 Programs Accessed Nutrition - 58% TACfit - 15% Largest % Referrals Echo - 50% Labs - 46% Internal Med - 27% Dexa - 24% Psycho-oncology - 19% 60% of the referrals were followed-up on by the patient. 60% of psycho-oncology referrals not followed-up on.
78 patients seen through July 201191% had at least one referral (including labs)The average number of referrals per patient is about 3 (2.9). Of all patients: 8% had 0 referrals 17% had 1 22% had 2 15% had 3 22% had 4 19% had 5 20% had 6 1% had 7 Programs Accessed Nutrition - 58% TACfit - 15% Largest % Referrals Echo - 50% Labs - 46% Internal Med - 27% Dexa - 24% Psycho-oncology - 19% 60% of the referrals were followed-up on by the patient. 60% of psycho-oncology referrals not followed-up on.
Navigation example: A 44 year old with a history of a brain tumor entered the clinic having experienced intermittent long-term follow up care. Known late effects of his treatment included seizures, persistent memory problems, right upper extremity weakness, tremor and depression. His recommended follow up included MRI every two years; neurological exam annually; evaluation of height, weight, BMI, blood pressure; and labs annually. Upon intake at the clinic, he had not had an MRI in ten years. He did not have regular healthcare and had not filled his prescriptions due to his perceived lack of insurance. The navigator contacted the survivor’s employer and determined that he did have health insurance which did not require pre-authorization or a co-pay. The navigator requested that his Human Relations department have an insurance card sent to him, as he had never received one previously. The navigator assisted in scheduling recommended follow-up appointments and followed up regularly by phone to ensure adherence to his plan of care. The survivor successfully completed follow up appointments, including labs, MRI, neurosurgery consultation and psycho-oncology counseling. The navigator also met with the survivor to discuss his living situation, long-term planning and employment. In this case, the navigator provided critical assistance to the survivor in accessing appropriate clinical and supportive follow-up care.
18 year old patient with a history of brain tumor diagnosis at the age of six and severe sensorineural hearing loss and cognitive late effects. Her recommended follow up includes DEXA scan, weight and metabolic screening, ophthalmology exam annually to monitor for cataracts, neurological exam annually to monitor for secondary tumor, and labs annually. Since the clinic did not accept the survivor’s form of Medicaid, the navigator worked with her Medicaid case manager to secure a primary care provider for her. The navigator provided the primary care provider with the survivorship care plan compiled by the oncology team and provided him with labs and recommended follow-up for the survivor. The navigator also worked with the primary care provider to get Medicaid authorization for the survivor to be seen for specialty consultation in the survivorship clinic. Finally, the navigator provided the patient with a list of scholarship programs for childhood cancer survivors as she is planning to attend college in the fall.
Critical roles unfunded post-grant and not operationalized are the survivorship navigator and the nutritionist. We applied for a 2-year university grant to sustain the navigation component. We still need an additional $8000 to retain nutrition support for the clinic. We are seeking other grant and philanthropic funds to offset these costs.