1. Laurence Baker, Rashmi Chugh, Karim Boudadi, Michelle Riba, Scott Schuetze Monika Leja, Denise Reinke, Mary Fenn, Rama Jasty University of Michigan Health System Conflicts of Interest 2014-2015 Cyt RxMorphotek, IncMarathon Pharmaceuticals LLC Sarcoma Survivorship Clinic: Managing the Physical and Psychological Effects of Cancer and its Treatment

2. Cancer Survivorship 20,000 children diagnosed yearly with cancer Nearly 70% are cured yet Among survivors, 2/3 had chronic health problem 25% had severe or lethal chronic condition 25% had 3 or more chronic health problems Oeffinger KC, Mertens AC, Sklar CA, et al: Chronic health conditions in adult survivors of childhood cancer. N Engl J Med 355:1572-1582, 2006.

3. Progress in Sarcoma & Fewer amputations 70% of Ewing & Osteosarcoma 50 % of Rhabdomyosarcoma More Sarcoma Patients Cured 1.Sarcoma recurrence 2.Second cancers 3.Chronic Health Conditions Heart disease Hypertension Type 2 diabetes Lipid disorders Renal failure Anxiety, depression Suicide Advances in adjuvant & neoadjuvant therapies

4. Impact of Sarcoma Treatment Medical issues that affect quality of life thyroid disorders, fertility issues, problems of mobility and strength, social problems (employment, marriage) Medical issues that shorten life heart failure, hypertension, renal failure, pulmonary insufficiency, depression/suicide, etc. Sarcoma Treatment: chemotherapy, radiation, surgery

5. Interdisciplinary Clinic Psychiatry Orthopaedic Surgery Medical Oncology Pediatric Oncology Physical Medicine & Rehabilitation Radiation Oncology Nephrology Gynecology Cardio- Oncology General Medicine Endocrinology VA Center of Excellence in Health Services Research & Development Monika Leja Larry Baker Center for Chronic Diseases

6. Sarcoma Survivorship Clinic Goals Effective education (determined by patients) Early diagnosis and treatment intervention of life threatening chronic medical diseases A new model of care Transition from pediatric oncology to adult medicine

7. Sarcoma Survivorship Research Goals Cardiac disease in osteosarcoma survivors  New improved diagnostic methodology  Genomic and epigenetic events associated with increasing Adriamycin dosage Monica Leja, MD cardio-oncologist University of Michigan Sarcoma Survivorship Clinic Jennifer Liu, MD cardiologist Jonathan Weinsaft, MD cardiologist Memorial Sloan Kettering Cancer Center Jean-Bernard Durand, MD cardiologist MD Anderson Cancer Center Lucy Godley, MD PhD oncologist University of Chicago Early diagnosis and treatment intervention of life threatening chronic medical diseases Monica Leja, MD cardio-oncologist Laurence H. Baker, DO oncologist University of Michigan Multidisciplinary Clinic Transition from pediatrics to adult medicine Lara Davis, MD Oncologist at Oregon Health & Science University SWOG AYA Committee Develop a Sarcoma Survivorship Network for Phase III studies Laurence H. Baker, DO oncologist University of Michigan Sarcoma Survivorship Clinic

8. Risk Assessment + Education + Regular Clinic Visits  Reduced Anxiety Mitchell et. al’s findings suggest that anxiety, rather than depression, is most likely to be a problem in long-term cancer survivors and spouses compared with healthy controls  Improve efforts to recognize & treat anxiety Annual Risk Assessment Survey: Learn their perception of risk of  their sarcoma returning  the possibility of a secondary cancer, and  the possibility of developing chronic health condition(s) Inform us how best to educate the patient about their risks based on their prior treatment and medical history Serve as a major tool to gauge reduction in anxiety over time We predict that by educating patients and by seeing them in our Survivorship Clinic regularly, we will put many of their concerns to rest and in turn reduce their anxiety. Mitchell, Alex J., et al. "Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis." The lancet oncology 14.8 (2013): 721-732.

9. Distress Thermometer (DT) “How would you rate your distress today, on a scale of 0 to 10?” Screening instrument for symptoms of depression and anxiety We will assess anxiety using the distress thermometer.

10. NIH PROMIS® Patient Reported Outcomes Measurement Information System Cooperative development group lead by the NIH (6 universities) begun in 2004 Longitudinal validation studies to test reliability and validity in new populations and treatments to refine the meaning, clarity, and literacy demands of all items conducted –focus groups –cognitive interviews –reading level analyses Self-Reported Patient Health o Physical Health o Anxiety o Depression o Fatigue o Sleep Disturbance o Social Function o Pain Interference o Global Health

12. PROMIS Questionnaire: Depression In the past 7 days… I felt fearful NeverRarelySometimesOftenAlways I felt worthless      I felt helpless      I felt depressed      I felt hopeless      I felt like a failure      I felt unhappy      I felt like I had nothing to look forward to      I felt that nothing could cheer me up      By early detection of depression, we should reduce suicide risk and extend survival of those cured.

13. Sarcoma Survivors with Psychosocial Issues Questionnaires: Risk Assessment Anxiety Depression Sarcoma Survivorship Clinic Comprehensive Exam Upjohn Depression Center Evaluation & Treatment Michelle Riba, MD Systematically collect data prospectively measuring physical & mental function over time There is a paucity of data related to psychiatric illnesses such as depression and anxiety in sarcoma survivors.

14. Early Diagnosis & Intervention for Sarcoma Survivors Sarcoma survivor’s late effects underscore the need for ongoing follow-up, assessment, and early intervention. The Sarcoma Survivorship Program will: sequentially measure the common sequelae of the effects of therapy on -physical function -cognitive abilities -anxiety and depression -overall health catalog the frequency of these sequelae and create a joint database with Memorial Sloan Kettering to capture data on this high-risk population Provide early diagnosis and treatment interventions Without appropriate awareness of late effects by patients and providers, symptoms may be discounted and/or attributed to other causes, leading to misinformed evaluation and possibly delayed and/or inappropriate treatment.