Samantha A. Carlson, LMSW OSW-C Director of Social Services Kalamazoo, MI

Samantha A. Carlson, LMSW OSW-C Director of Social Services Kalamazoo, MI

Value of Survivorship Clinics: What they are, why the are being created, and supporting data and research Comprehensive Survivor Care Benefits to the Survivor Benefits to the medical team

An Interdisciplinary Team created to address longstanding issues/ late effects of cancer treatment. Goal of Survivorship Clinics: Surveillance & Early Detection Prevention (Recurrence and Secondary Cancers) Intervention for Quality of Life (Psychosocial) Coordination of Care Source: National Coalition of Cancer Survivorship (NCCS) Source: Institute of Medicine (IOM) Report Lost in Transition

Volume of survivors is increasing: Evolution of patient centered care Increase in complexity and dynamics of cancer late effects 12 million Americans are cancer survivors (ACS 2008) 2012: About 1,683,910 new patients expected Cancer survivors have twice the risk of developing a second cancer than the general public. 5 year survival rate is on the rise for all cancers: 1975-1977: 49% 2001-2007: 67% American Cancer Society (ACS) Report 2012

A Livestrong Report: June 2010 (Survey 2004) 49% survivors felt their non-medical psychosocial needs were not being met 70% of survivors stated oncologists did not offer support as a standard of care. Remaining 30% note oncologist did not provide resources to help with the concerns. Mental health needs are on the rise for cancer survivors, without care due to cost.(hewitt & Rowland, 2002). 1/3 Survivors did not know who was following their cancer care. (Miedema et al., 2003).

Cancer survivors expressed dissatisfaction with their oncologist s support with the secondary aspects of cancer, such as: depression fear of recurrence chronic pain ongoing health challenges Infertility sexual dysfunction difficulty with relationships financial or job insecurity Source: http://livestrong.org/pdfs/30/lssurvivorsurveyreport.

Federal: Dept of Defense (1992), Medicare, Center for Disease Control, National Cancer Institute For Profit: Pharmaceutical companies Non-Profit & Community: ACS, LLS, Livestrong, Komen Foundation, YMCA, National Coalition for Cancer Survivorship Clinical & Academic: Universities, medical centers

Recommendation of: IOM and National Research Counsel 2005 Report: From Cancer Patient to Cancer Survivor: Lost in Transition Purpose of the standard: is to have cancer programs develop and implement a process to monitor the dissemination of survivorship care as part of the standard of care. Survivors should: be provided with a comprehensive care summary and follow up plan that is clearly and effectively explained. Required to be presented annually to the Cancer Committee

From Cancer Patient to Cancer Survivor: Lost in Transition (2005) (2006) Maria Hewitt, Sheldon Greenfield, and Ellen Stovall. Editors: Committee on Cancer Survivorship: Improving Care and Quality of Life, Institute of Medicine and National Research Counsel Source: National Academies Press http://www.nap.edu/catalog

Utilization of resources Alleviate scheduling constraints Pro-active surveillance in place of re-active symptom management ACoS Requirement in 2015 Overall health care cost savings

Change = Apprehension and resistance Trust in the new system (patients and physicians) Transition from the established relationship with the oncologist Fragmented health care system- connecting the pieces Funding for comprehensive clinics Higher cost to the institution for additional team members

Patient centered care Enhanced surveillance Quality of care: longer office visit to address late effects of treatment Psychosocial Physical Empowering patients to invest in healthy lifestyles Lower cost to the survivor

How is a survivor defined: In your professional opinion In your organization By your clinical team By your physicians By your patients and caregivers

Am I a Survivor? Definition of survivorship: American Cancer Society: believes each individual has the right to define his or her own experience with cancer. www.cancer.org National Coalition for Cancer Survivorship: From the moment of diagnosis and for the balance of life, an individual diagnosed with cancer is a survivor. www.cancer.gov

Crisis of diagnosis (education, comprehension, emotional coping) Decisions regarding treatment First Treatment (accepting, adjusting, and participating in actions of treatment) Bumps in the road (adapting to modified plans and expectations- intense relationship with providers) Finishing treatment (apprehension, relief, anxiety of non-action) Survivorship: See you in three/six months for a follow up Now what?

Physical changes: Pain/Swelling Skin changes Sleep Sexual function Hormonal changes Bladder or bowel changes Cognitive Changes: Memory Attention Chemo-brain Energy Changes: Fatigue/stamina Sleep cycle changes Emotional Changes: Sensitive mood Anxiety Depression PTSD in cancer survivors

What if there is a recurrence? they didn t get it all? what will the long lasting side effects be? the treatment causes a new cancer? I can t get used to my new body (scars, hair loss, hormone changes, joint issues, weight gain/loss)? my cancer experience changes my relationships (family, friends, work, etc.)

Family Communication Roles in the family Relationships Significant Other Children Parents Social Activities Returning to activities new & old Friendships Survivor Guilt Milestones Holidays Appointments Financial Concerns Medical bills Time off work Cost of future care Employment Financial strain Time off work Relationships of resuming previous role

NCCS Essential Components of Survivorship: Prevention & Detection Surveillance (Spread, Recurrence, Secondary Cancer) Intervention for consequences of cancer treatment Coordination between specialists and PCP Source: -From Cancer Patient to Cancer Survivor Lost in Transition (2006)

What is the organizations: Culture Structure System Integrate into what already exists: Existing Multidisciplinary Clinics Communication, PR, Advertisements Scheduling, Documentation & Technology Accreditation Requirements Space and logistics

Key Team Members Who gets involved? Board of Directors Administration IT/Data Facilities Fund Development Public Relations Billing Clinical team Clinical team Physicians Mid levels Social Work Dietician Financial Counseling Nurse Navigator External referrals

Livestrong Foundation & National Center for Cancer Survivorship Pharmaceutical Companies Psychosocial Oncology Research NCI office for Cancer Survivorship Private Donors Non-Profits (ACS) or Foundations Educational Institutions- Partnerships US Department of Defense Breast Cancer Research Program

Advertisement Brochures Letter to patient Website Health Evaluation Quality of Life (QOL) Treatment Summary Survivorship Plan Journey Forward Livestrong Documentation Charting system Summary of visit Letter to Primary Care MD Letter to oncologists Letter to the survivor

Two kinds of Survivorship Plans: Clinician (from the physician to the patient and PCP) Survivor (based on non-profit cancer organizations) Examples: Journey Forward Livestrong Clinical: Official Recommendations Institute of Medicine & National Research Institute ACoS Requirement 2015 Summary of care Health risks of treatment Recommendations for health and wellness

Institutional Outcomes Utilization of Resources and Patient Flow Evaluation ACoS Standard Annual Report (Cancer Committee) Patient Satisfaction Focus groups Survey participant Employee Satisfaction Survey team involved in Survivorship Clinic Revise and update system as warranted

Clinical Internal Medicine (PCP) Specialty Pulmonary Endocrinology Cardiology Dental Assessment Plastic Surgery Fertility Wellness Wellness: Mental health Counseling sexual changes Neuropsychology (cognitive) Rehabilitation PT, OT, SLP Lifestyle changes fitness nutrition

Behind the Scenes: Patient Selection/Referral Consent from the Oncologist Discussion with the pt Scheduling Mailing forms Reminder calls for appointment The Actual Clinic Staffing of the Clinic: Scheduling/MA Clinical team Day of Clinic: Review of patients Prep of forms Follow up after Clinic: Communication to oncologist Survey of Survivor for satisfaction and revision

Internal Physicians All Staff Clinic involved Survivors and Caregivers Volunteers Focus Groups External Primary Care Physicians Referral sources Specialists External resources: Fertility Physical Therapy Counseling

Referral to Clinic Pilot group: Letters mailed to selected survivors Self, External/Internal MD Oncologists give consent Survivor scheduled, QOL form mailed Mid-Level reviews chart, generates: Summary of Care Survivorship Care Plan (Livestrong or Journey Forward) Week before clinic- team notified of survivors scheduled Day of Clinic Team meeting Round Robin Office Visit Mid-Level reviews with Survivor: Summary of Care Survivorship Plan Social Worker Psychosocial Consultation Dietician Nutritional Consultation Financial Counselor Insurance Nurse Coordinator External referrals (Rehab, etc) Summary of visit given to oncologists and PCP Survivor resumes seeing Oncologist

Survivors were surprised these issues were not addressed with their oncologists.

Questions? Contact Information: Samantha Carlson, LMSW OSW-C scarlson@wmcc.org (269) 373-7446 Thank you!

You don t ever forget that it may come back. Your life is never going to be the same as it was before the cancer. There is no return to the old way life was, the old normal, the old expectations. A little part of me died with my cancer, and I don t think it s fair to tell my family my fears.