1. Jennifer Klemp, PhD, MPH Assistant Professor Director, Cancer Survivorship University of Kansas Cancer Center March 2013 Creating and Implementing a Survivorship Program in Your Practice

2. Disclosure Name of CompanyFounder/CEOSpeakers Bureau Cancer Survivorship Training, Inc √ Novartis Pharmaceuticals Company √ Pfizer Oncology√

3. Overview This course will healthcare providers: Demands of Cancer Survivorship –Who, What, When, Where, Why, How Recognize the majority of cancer survivors experience long- term and late effects of their treatment Understand how Survivorship Care can promote and contribute to long-term health and integration into the EHR Delivering Multidisciplinary Survivorship Care: What does it look like? Common Concerns & Research Targets 3

4. “Who” is a Cancer Survivor? A cancer survivor is anyone who has been diagnosed with cancer – from the time of diagnosis and for the balance of his or her life. 4 NCCN: National Coalition for Cancer Survivorship http://www.canceradvocacy.org/

5. Cancer Control Continuum Prevention Diet/Exercise Sun Exposure Alcohol Tobacco Control Chemo- prevention Early Detection Cancer screening Pap test Mammogram PSA/DRE Fecal occult blood test Colonoscopy Awareness of cancer risk, signs, symptoms Diagnosis Oncology/ surgery consultation Tumor staging Patient counseling & decision making Clinical trials Informed Decision Making Treatment Chemotherapy Surgery Radiation Symptom management Psychosocial Maintenance therapy Survivorship Long-term follow-up/ surveillance Manage late- effects Rehabilitation Coping Health promotion Prevention Palliative Care Phases of Cancer Care Adapted from: http://cancercontrol.cancer.gov/od/continuum.html. Accessed July 25, 2011. End of Life Support patient & family Hospice Informed decision making

6. “Who”: Growing Number of Cancer Survivors? 6 Estimated 18 million by 2020 http://cancercontrol.cancer.gov/ocs/prevalence/prevalence.html#survivor; http://www.nih.gov/news/health/jan2011/nci-12.htm. Accessed July 25, 2011.

7. “Who”: Age of Cancer Survivors Estimated Number of Persons Alive in the U.S. Diagnosed With Cancer by Current Age* *(Invasive/1st Primary Cases Only, N=11.4M survivors)

8. “Who”: Estimated Number of Cancer Survivors in the U.S. based on November 2009 SEER data by Site *(Invasive/1st Primary Cases Only, N=11.4M survivors)

9. 9 Mental Health Physical Therapy/ Occupational Therapy Neurology/ Neuropsychology Endocrinology Cardiology Gynecology/Urology Sexual Healht/Fertility Pulmonary Pain Management “Who” Delivers Survivorship Care Survivorship care is by nature multidisciplinary and ideally provided using a team approach IOM, 2006 Specialty/Pri mary Care

10. “What”: Survivorship Care is a Dynamic Process Physical/Medical Social/Well Being Psychosocial Existential/Spiritual A multidisciplinary approach to survivorship care considers a providers’ expertise and aims to meet each survivors unique physical, social, psychosocial and spiritual needs

11. “What”: Manage the Physical Consequences of Cancer Treatment Long-term Side EffectsLate Side Effects Chemotherapy Fatigue, endocrine symptoms, infertility, neuropathy, cognitive function, heart, kidney, and liver problems Surgery Scars, chronic pain Radiation Therapy Fatigue, skin sensitivity Chemotherapy –2 nd primary cancers, cataracts, infertility, liver problems, lung disease, osteoporosis/endocrine issues, cognitive function, weight gain Surgery –Lymphedema, scar tissue Radiation Therapy –Cataracts, heart, lung, intestinal and thyroid problems, second primary cancers, memory problems, cavities and tooth decay 11

12. “What”: Manage the Psychosocial Late and Long-Term Effects of Cancer Treatment Psychological –Depression, anxiety (fear of recurrence), uncertainty, isolation, altered body image Social –Changes in interpersonal relationships, concerns regarding health or life insurance, job loss, return to school, financial burden Existential and spiritual issues –Sense of purpose or meaning, appreciation of life 12

13. 13 “When”: Across the Continuum of Care- Modified Cancer Care Trajectory Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Translation. Available at http://www.nap.edu/catalog.php?record_id=11468. Accessed July 25, 2011. Diagnosis and staging Treatment with intent to cure Cancer-free survival Recurrence/ second cancer Death Treatment failure Start Here Delivery of survivorship education & preventive strategies Delivery of post-treatment survivorship care Delivery of survivorship care in the advanced cancer setting Managed chronic or intermittent disease Palliative treatment

14. “Where” Do Cancer Survivorship Receive their Care? 14 Multidisciplinary –physician, nurse practitioner, psychologist, social worker Disease-specific –Breast, prostate Consultative service –One-time comprehensive visit –Treatment Summary and Care Plan Integrated Care Model –Usually a NP works within the team –Ongoing care Shared Care Model –Collaboration with primary care

15. Care shared by two or more clinicians of different specialties (ie. Oncology and Primary Care) Who does what: understanding of roles and responsible of care Knowledge transfer –Treatment summary and care plan  Specific information on disease  General information about late & long-term effects Communication channels –Contact information for oncology physicians and nurses Active patient involvement –Encouraged to contact primary care physician with problems –Provided with the information given to the primary care physician Renders et al: Diabet Med 20:846-852, 2003; Jones et al: Am J Kidney Dis 47: 103-114, 2006 Neilsen et al: Qual Saf Health Care 12(4) 263-272. “Where” Elements of Shared Care Delivery

16. “Why”: Recommended by National Experts 16 The Institute of Medicine report on cancer survivorship states:  Survivorship care is a neglected phase of the cancer care trajectory  Cancer recurrence, second cancers, and treatment late effects concern survivors  Few guidelines are available for follow-up care  Providers lack education and training

17. “Why”: Current Delivery is Fragmented, Poorly Coordinated 17 Poor communication -Among clinicians -Between clinicians and patients Limited Guidance & Proven Outcomes: on medical & psychological tests, exams, follow-up -Expert consensus (ASCO, COG) -NCCN 2013 version 1.2013 (www.NCCN.org) Need Continuity of Care -Absence of locus of control or central responsibility for follow-up care -Patient centered outcomes targeting lowered healthcare costs

18. “Why”: National Standards QOPI –Initiatives Survivorship Quality Indicators in audit regarding survivorship: Chemotherapy treatment summary provided to patient within 3 months of chemotherapy end. Chemotherapy treatment summary provided or communicated to practitioner(s) within 3 months of chemotherapy end. Chemotherapy treatment summary process completed within 3 months of chemotherapy end.

19. “Why”: National Standards for Survivorship Care Plans by 2015 Survivorship Care Plan is given to each cancer patient upon completion of treatment. The Survivorship Care Plan contains a record of care received, important disease characteristics, and a written follow-up care plan incorporating available and recognized evidence-based standards

20. “How”: Survivorship “Chronic” Care Model 20 Health System Clinical Information Systems EHR, Care Plan Self Management & Decision Support Informed Activated Patient Prepared Proactive Providers Community Resources & Policies Non-profits, advocacy groups Wellness communities Government agencies Productive Interactions Functional & Clinical Outcomes Delivery System Design Cancer Survivorship Care Adapted from: http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s=2. Accessed July 25, 2011.

21. “How”: Oncology Patient Centered Medical Home 21

22. “How”: Elements of Cancer Survivorship Post-Treatment Care Prevention: of new cancers & other late effects of treatment; compliance with long-term therapy Surveillance: for cancer recurrence or 2 nd cancers; evaluate new symptoms –screen for complications from cancer diagnosis & Tx Intervention: for consequences of cancer Rx –manage complications from cancer diagnosis & Tx Coordination: between specialists & primary care providers to ensure health needs are met Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Translation. Available at http://www.nap.edu/catalog.php?record_id=11468. Accessed July 25, 2011.

23. “How”: Development of a Survivorship Care Plan Description of diagnosis Summary of treatment –Therapies –Contact information for each key provider –MAJOR complications experienced Individual risk for late effects, second cancers –Risk assessment and management strategies: Give orally & in writing –Cancer risk –Genetic Counseling for appropriate patients. Long-term monitoring for late effects –Ongoing “To Do” List:  Lifestyle strategies, adherence to oral therapies, etc… Jacobs, L. Developing Models of Care for Adult Cancer Survivors.2006.

24. EPIC Treatment Summary and Survivorship Care Plan Template Highlights: EPIC 2012 (enhanced workflow with EPIC 2014) @___@ 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

27. “How”: Barriers to Post-Treatment Survivorship Care Planning How to implement a survivorship care plan?  Templates available  Time consuming  No/lack of reimbursement  Not easily configured with medical records What will we do with the plan? –Will it really be used??? –JCO Dec, 2011: did not improve patient reported outcomes –JOP Jan, 2012: not ready for prime time Unrealistic demands on limited staff 27 Grunfield et al., Evaluating Survivorship Care Plans: Results of a Randomized, Clinical Trial of Patients With Breast Cancer, JCO Dec 2011.

28. “How”: Barriers to the Delivery of Post-Treatment Survivorship Care Limited experience on the best way to deliver quality care –Models of providing care are currently being evaluated –Will depend on resources available and clinical expertise  PCP’s are not prepared  Oncologist want to maintain control & do not communicate  Patient are in limbo- who does what?  Need ongoing professional education to bridge the gap between oncology, specialty and primary care 28 Grunfeld, JCO; 2006, 2011 Cheung, JCO; 2009, 2010 Del Giudice, JCO; 2009 Nekhlyudov, JCO; 2009 Potosky, J Gen Int Med, 2011

29. Opportunities for Continuing Education: Survivorship Care Training Web/Mobile Training Program Cancer Survivorship Training for Healthcare Professionals CE and content matter expert developed curriculum www.cancersurvivorshiptraining.com

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31.  S TEP 1: S URVIVORSHIP W ORKING G ROUP 31 Developing a Survivorship Working Group helps to ensure a cohesive team approach while communicating what survivorship care should look like for your patients. Bringing together key stake holders from all departments and collaborative practice settings is vital for a successful and productive working group. (ie., clinicians, oncology nursing, cancer rehabilitation (PT, OT, Speech), scheduling & registration, patient support services (psycho- oncology, social work, dietetics), administration, etc….).  Champions and Collaborators promote internal support for a cancer survivorship program as well as identify essential multidisciplinary care providers. Internal support is mandatory and without it a functioning and effective program cannot be established.  Identify program leadership and who will be responsible for overseeing the program development and initiation

32.  S TEP 2: N EEDS A SSESSMENT Implementing cancer survivorship care is best begun with a needs assessment. Patient, staff and provider input will be instrumental while determining where gaps of care may be occurring and where appropriate modes of survivorship care are already in place and working well. Include: Patients, Providers, Staff, and Community 32

33.  S TEP 3: D EFINE C ANCER S URVIVORSHIP S ERVICES & P ROGRAM G OALS  Utilize needs assessment data to identify services gaps  Agree upon organizational definitions of survivorship care across the cancer care trajectory  Define Objectives and Goals *Including meeting national standards  Develop a timeline working towards program implementation 33

34.  Step 4: Implementation Strategy Determine program scope, cost, reimbursable services and strategy for implementation –Identify potential barriers to implementation –Strategies for dismantling organizational barriers –Reimbursable vs. non-reimbursable –Connect with potential collaborators to define the program goals and illicit support and formal collaboration –Define formal pathway for referral –Facilitate an in-service for providers and staff, encourage continuing education with a focus on cancer survivorship –Patient scheduling system –Medical records documentation (integration in the electronic health record) –Development of collateral materials – website content, flyers, brochures, newsletters, patient referral forms –Determine data points and how these will be collected (i.e., Excel or Access) for timely reporting of outcomes 34

35.  S TEP 5: I MPLEMENTATION OF P ROGRAMS & S ERVICES A step-wise implementation can be more successful than launching multiple services/programs simultaneously. Also, determine services and programs that will result in good outcomes and start there…beginning with success can set your program off to a good start! –Develop a timeline to keep development moving forward –Expect barriers and obstacles –Outreach –Develop and utilize referral pathways and ensure information flow goes both ways –Ongoing data collection of outcome variables 35

36.  S TEP 6: P ROGRAM A SSESSMENT Ongoing program assessment is essential to success. Monitoring the program’s effectiveness and making modifications when necessary will only serve to improve survivorship care. There is not one right way to deliver quality survivorship care! –Timely reporting to the working group, staff and administration, community, –Identify strategies that are working and those that continue to meet obstacles, –Meeting standards for national accreditation, –Modify services /program when necessary. 36

37. “How” Does KUMC/KUCC Deliver Survivorship Care? 37

38. Access to Services Shortly After Diagnosis Survivorship Care Fertility Preservation Consult Nutrition Consult Exercise Evaluation Quality of Life Cancer Genetics Consult Clinical Trials 38

39. Examples of Post-Treatment Care Survivorship Care Diet and Exercise Interventions Cardio- Oncology Quality of Life Clinical Trials 39 Cancer Rehab

40. Academic Medical Center & Hospital 9 Community Locations Midwest Cancer Alliance- Survivorship Clinic in Hays, KS “A Modern Family”

41. Example: Prevention At Both Ends of the Cancer Continuum Prevention Diet/Exercise Sun Exposure Alcohol Tobacco Control Chemo- prevention Early Detection Cancer screening Pap test Mammogram Fecal occult blood test Colonoscopy Prostate-specific antigen/Digital rectal exam Awareness of cancer risk, signs, symptoms Informed decision making Diagnosis Oncology/ surgery consultation Tumor staging Patient counseling & decision making Clinical trials Treatment Chemotherapy Surgery Radiation Symptom management Psychosocial care Survivorship Long-term follow-up/ surveillance Manage late- effects Rehabilitation Coping Health promotion Prevention Continuum Breast Imaging & Treatment Breast Cancer Prevention Center 41 Adapted from: http://cancercontrol.cancer.gov/od/continuum.html. Accessed July 25, 2011.

42. Access to Empirically Driven Services & Clinical Research Follow-up continuity clinic for patients Monitor risk of breast & related cancers Reproductive health (fertility) & sexuality Cardiac risk & evaluation Endocrine/menopausal symptoms Psychosocial/cognitive function Genetic counseling and testing Weight management: diet & exercise Cancer Rehab/PT 42

43. What Trends Do We See in First 262 Patients in BrCa Survivorship Clinic? Median age = 58 (34-86) 88% = Stage 1 & 2 BrCa 70% were ER+ 49% were premenopausal at diagnosis –Only 4% are premenopausal at entry into the Survivorship clinic Average Weight Gain: 5 pounds –Baseline BMI at diagnosis: 25.79 –BMI at time of 1 st Survivorship Visit: 27.38 Median # of minutes of exercise/week = 60-120 Klemp JR, Smith AK, Ranallo L, Godbey D, Khan QK, Fabian CJ. Baseline characteristics of women initiating follow-up care in a newly developed breast cancer survivorship center. Cancer Res. 69, 2009.

44. KUMC Breast Cancer Survivorship Center n=262 Menopausal Symptoms: –58% Hot Flashes –56% Vaginal Dryness –46% NOT sexually active 92% had undergone a bone density analysis; 50% of these women had low bone density and were on a bisphosphonate A sizable proportion are not getting regular women’s health screening tests from PCPs. Quality of life continues to be negatively impacted. Patients report an interest in Energy Balance, Menopausal Symptom Management, and concern over Heart and Bone Health

45. Examples of Common Concerns & Survivorship Research Targets Long-term impact of cancer and its treatment –CVD risk Diet and exercise –Weight gain –Loss of lean muscle Adherence with long-term therapy –Side effects (High Dose Vitamin D) –Cost Quality of life –Cognitive dysfunction –Fatigue –Distress –Depression Sexual health 45

46. “Being cancer-free is not the same as being free of cancer” Julia Rowland, PhD Director, NCI Office of Cancer Survivorship 46

47. Resources IOM: Lost in Transition report from 2005 IOM: Implementing the Survivorship Care Planning, Workshop Report, 2006 JCO Special Review Issue: Cancer Survivorship, November 10, 2006 M. Feuerstein (ed.) Handbook of Cancer Survivorship, Springer, 2007 Journal of Cancer Survivorship: New in 2007 P.Ganz (ed.) Cancer Survivorship: Today and Tomorrow, Springer, 2007 www.cancersurvivorshiptraining.com 47