Mandi Pratt-Chapman, MA Chi H. Kim, MD Lorenzo Norris, MD

1. Setting Up for Survivorship Success Mandi Pratt-Chapman, MA Chi H. Kim, MD Lorenzo Norris, MD The George Washington University Medical Center

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

5. Defining Survivorship

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

7. Estimated Number of Survivors

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

11. Survivorship Challenges Quality of life (QOL) Late effects Long-term effects

12. Top Five Concerns Source: American Cancer Society Studies of Cancer Survivors.

14. New CoC Standards for Survivorship and Patient Navigation by 2015

15. ACCC Program Guidelines

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

23. caSNP Executive Training Next training: Spring 2012 Information: www.gwumc.edu/casnp

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

29. Thriving After Cancer Program Chi H. Kim, MD Assistant Professor of Medicine

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

35. Survivorship Care Plan

36. Survivorship Care Plan

38. Psychosocial assessment completed

39. Surveys sent to survivors

40. Discussion of visit flow

41. Follow-up and adherence to recommendations

42. Communication with patient

43. Communication with PCP

44. TACfit

45. Survivorship seminars

46. Pre/post clinic provider huddles

47. Multidisciplinary providers meet with patient: oncology, internal medicine, psychiatry, social work navigator, dietitian

48. Review summary/care plan with patientPre-Visit Post-Visit

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

52. Evaluation Approach Tracking logs Validated tools Survivorship Care Plans Self-report surveys

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

55. Top Program Successes But most importantly: The survivor experience

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!

60. Sustainability: TAC Costs

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

67. GW Needs Assessment Less Fragmentation Treatment for High Risk More Support

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)

69. Capacity Assessment Five-Year Plan

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

75. Strategies to Manage Psych Needs Challenge of Distress Screening

76. Signs and Symptoms of Distress Quick Formula for Referral Distress score 5+ 3 or more emotional symptoms Referral

77. Know Adjunctive Providers

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