1. Survivorship Programs in Wisconsin as “Pathways to Transition and Roadmaps to Survivorship” Getting Started Mindy Gribble RN HN-BC Survivorship Program Coordinator, Marshfield Clinic and Tiffany Marbach RN MSN Medical College of Wisconsin

2. Presentation Outline ● Mindy ● Survivorship Care Planning in Wisconsin ● Historical momentum building ● New CDC demographics ● Guidelines and updates ● Input from survivors and their loved ones ● Marshfield Clinic’s WINGS Program; first steps – future plans ● Tiffany ● Starting With Wisdom: What RN’s need to Know ● Evidence–based assessment ; Listening to patients and to providers ● Summary: Partnerships to support Wisconsin Survivors ● “Pathways to Transition” and “Roadmaps to Survivorship.” ● Helpful and Free resources! ● Q & A

3. National to State; Advocacy Momentum

5. Definitional Issue: Who is a CANCER SURVIVOR? ● Philosophically, anyone who has been diagnosed with cancer is a survivor – from the time of diagnosis for the balance of life – NCCS, CDC (13 million as of April 2011, 20 million by 2020) ● Caregivers and family members are also cancer “co-survivors” (1:3 or 100 million) ● Term “survivor” is not always a good fit ● Historical similarities to Cardiac Rehabilitation, chronic disease management models

6. “The Seasons of Survival” ● Acute Survivorship ● Time of cancer diagnosis and any treatment that may follow ● Transitional Survivorship ● The difficult time when celebration is combined with fear ● Extended Survivorship ● Includes individuals living with cancer as a chronic disease and those in remission because of ongoing treatment ● Permanent Survivorship “Cancer free, but not worry free” ● 2/3 of survivors return to “new normal” ● 1/3 report continuing physical, psychosocial, or financial consequences ● Most survivors go back to the care of their primary provider Cure Summer 2009 – Kenneth Miller MD

8. Estimated Number of Persons Alive in the U.S. Diagnosed with Cancer on January 1, 2007 by Site (N = 11.7M) Cancer SitePrevalence Female Breast 2,591,855 (22.1%) Prostate 2,276,112 (19.4%) Colorectal1,112,493 ( 9.5) Gynecologic 999,450 (8.5%) Hematologic (HD, NHL, Leukemia, ALL, Myeloma) 969,295 (7.2%) Urinary Tract (Bladder, Kidney, Renal Pelvis) 816,726 (7%) Melanoma793,283 (6.8%) Thyroid434,256 (3.7%) Lung370,617 (3.2%) Other1,720,266 (12.6%) cancercontrol.cancer.gov/ocs/prevale nce/prevalence_d.html

9. Estimated Number of Persons Alive in the U.S. Diagnosed with Cancer on January 1, 2007 by Current Age (Invasive/1st Primary Cases Only, N = 11.7 M survivors) Age Group Prevalence Count Less than 19 years106,083 20-39 years522,000 40-64 years4,122,070 +65 years6,963,582 cancercontrol.cancer.gov/ocs/ prevalence/prevalence_d.html

10. Estimated Number of Persons Alive in the U.S. Diagnosed with Cancer on January 1, 2007 by Time From Diagnosis and Gender (Invasive/1st Primary Cases Only, N = 11.7 M survivors) Time Since Diagnosis MaleFemale 0 to < 52,110,3052,018,434 5 to 101,414,0181,435,608 10 to < 15900,238981,164 15 to < 20446,691686,528 20 to < 25221,063439,583 ≥ 25260,730799,365 Complete5,353,0546,360,682 cancercontrol.cancer.gov/ocs/prevale nce/prevalence_d.html

11. Post-Treatment Myths ● For those who’ve experienced cancer: ● I should be celebrating ● I should feel well ● I should be the pre-cancer me ● I should not need support ● For providers seeking to support them ● “One size” Survivorship Programming fits all “While we don’t want each health system to reinvent the wheel, we do need to realize that urban and large systems and their programs may not apply to small cities and rural systems.” - Participant, 2010 WI Survivorship Forum Stanton, Ganz et al. Promoting Adjustment after Treatment for Cancer. Cancer. 2005:104 (11)2608-2613

14. IOM Report Recommendation 2 ● Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained ● This “Survivorship Care Plan” should be written by the principal provider(s) who coordinated oncology treatment ● This service should be reimbursed by third party payers of health care

15. Key Elements of Successful Cancer Survivorship Plan - “Prevention, Surveillance, Intervention and Coordination” ● Summary of treatments received ● Follow up "care plan“ ● Potential late effects, their symptoms and treatment ● Recommendations for cancer screening (recurrence or new primary) ● Psychosocial effects (including relationships and sexuality/fertility) ● Financial issues (work, insurance and employment) ● Recommendations for a healthy lifestyle ● Genetic counseling (if appropriate) ● Effective prevention options ● Referrals for follow-up care ● List of support resources

16. WI CC Plan Survivorship Chapter Priority III: Increase Access to Quality Care and Services ● Strategy B: Ensure cancer survivors have an individualized survivor care plan Provide information about survivorship care plan templates and available models to implement survivor care plans on the WI CCC Program website Explore possibility of standardization of key survivorship care plan elements across the state

18. Mission – To provide an environment for patients and families that nurtures healthy survivorship by offering education and resources that maximize optimal medical care and quality of life from the time of diagnosis through the balance of life. Three Areas of Focus Comprehensive Care Summary and Wellness Plan Evidence-based education, resources and support Collaborations: community, treatment team, translational research, grant funding opportunities Nursing Process: Assess, Plan, Implement, Evaluate ….and begin again…

19. “Educate providers that there is more to a cancer diagnosis than a cure” – Participant, 2010 WI Survivorship Forum

22. Journey Forward was created by a collaboration among : National Coalition for Cancer Survivorship UCLA Cancer Survivorship Center Oncology Nursing Society WellPoint, Inc. Genentech “ONS is a welcome addition to the team,” said Patricia Ganz, MD, Director of the Survivorship Center at UCLA’s Jonsson Comprehensive Cancer Center. “Oncology nurses are at the forefront of preparation of Survivorship Care Plans.”

23. Survivorship Care Plan Builder 3.0 Easy-to-use forms that expedite the preparation of treatment summaries and follow-up care plans Helpful, time-saving utilities such as a built-in regimen library, BSA and BMI calculators, and various checklists Support for breast cancer, colon cancer, lymphoma, and other types of cancer. Ability to customize Survivorship Care Plans with your practice logo Ability to expand Care Plans with information on symptoms to watch for, effects of treatment, support resources, and more

24. Survivorship Care Plan can be Printed, Saved, Edited or Emailed Free at JourneyForward.org

25. Oncology Issues May/June 2011 “ Barriers to Survivorship Care Plan Implementation” Barrier: 1. Time Constraints 2. IT issues 3. Process and Responsibilities 4. Care Plan Recommendations Strategies to Overcome: 1. Use tumor registry data, use available software 2. New HER tools 3. ID Survivor populations on which to focus for initial implementation 4. Collaborate with multidisciplinary team to establish; NCCN/ ASCO

26. Who? What? Journey Forward template “plus” Practice guidelines, provider checklist, evidence-based resources When? Where? How long does it take? What does it mean to patients? To PCP’s? Survivorship Program Transition Visit “To be effective consumers, survivors first need to re-negotiate life itself. Live for today.” – Meg Gaines, 2010 WI Survivorship Forum

27. Survivorship Care Programs in Wisconsin: “Pathways to Transition” and “Roadmaps to Survivorship” Summary ● Care Plans: Partnerships to improve cancer care ● Patient input and advocacy is key ● No need to reinvent the wheel ● Nursing processes - plan, implement, evaluate, and begin again ● Helpful Resources: see WI CCP website ● NCI Facing Forward series ● NCCS Toolkit ● Care Plan templates ● National guidelines, WI CC Plan 2010-2015, WI Team collaborations