The Cancer Survivorship Initiative

The Cancer Survivorship Initiative Lisa D Andrea RN, BSN, OCN, CNBN, CPN Wilson Cancer Resource Center, Beaumont Troy Assistant Nurse Manager, Oncology Nurse Navigator and Breast Cancer Survivorship Clinic Facilitator The Beaumont Survivorship Mission The Cancer Survivorship Program will partner with patients, families and their healthcare providers to promote optimized health and healing of mind, body and spirit. We will support and empower patients through integrative practices and education before, during and beyond treatment. 2 Survivorship Statistics Breast Cancer Stage 5 Year Relative Survival Rate 0 (in situ) 100% l 100% II 93% III 72% IV 22% - National Cancer Institute s SEER Database 2014 (Survivorship, epidemiology, and end results) 3 1

Survivorship Statistics How Many People Survive 5 Years Or More after Being Diagnosed with Cancer of Any Site? Percent Surviving 5 Years 67.0% - Based on data from SEER 18 2007-2013. - Gray figures represent those who have died from cancer of any site. - Green figures represent those who have survived 5 years or more 4 Predicted Survivorship Forecast 15.5 Million 2016 26.1 Million 2040 - National Cancer Institute, July 8, 2016 5 Benefits of Survivorship Practices Institutional Best Practices Meets the standards and mandates of practicing institutions Qualifies institutions for accreditation eligibility Patient Care Best Practices Provides the patient with optimal outcomes Facilitates patientprovider relationships throughout the continuum of care It is the right thing to do for the patient 6 2

The Standards Commission on Cancer Standard 3.3 Survivorship Care Plan: The cancer committee develops and implements a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment. - Commission on Cancer 7 The Standards NAPBC Standard 2.20 - A comprehensive breast cancer survivorship care process, including a survivorship care plan with accompanying treatment summary, is in place within six-months of completing active treatment and no longer than one-year from date of diagnosis. The survivorship care process is evaluated annually by the Breast Program Leader (BPL). - National Accreditation Program for Breast Centers 8 - Oncology Nursing Society 9 3

Every cancer patient looks forward to the day when the doctor says that treatment is finally complete. At that point, the end of cancer treatment signals the beginning of a new journey: Survivorship. - National Comprehensive Cancer Network 10 The Patient s Perception What does survivorship mean to your patient? For those who have completed treatment, think for a moment How do you think they feel? Excited? Relieved? Grateful? Thankful? Not always 11 The Burdens of Survivorship Physical Pain, Fatigue, Lymphedema, Neuropathy, Vaginal Dryness, Chemo-Brain Emotional Anxiety, Fear, Anger, Guilt, Grief, Spirituality Situational Returning to Work, Loss of Friendships/Relationships, Financial Disparities, Inability to Achieve Pleasure with Intimacy 12 4

Late Effects of Treatment Blood Clots Cardiac Toxicities Infertility Lymphedema Neuropathies Pulmonary Fibrosis Premature Menopause Secondary Malignancies 13 Survivorship Models Oncology Nurse Navigator facilitated Oncology Nurse Practitioner facilitated Non-clinic / ONN one-on-one visits Others 14 Breast Cancer Survivorship Clinic Overview Group education session Survivors gather in the Wilson Cancer Resource Center Introduction of survivorship resources Brief educational session Social worker Dietitian Sharing and Caring representative Group tour of Integrative Medicine department Private consultations Nurse Navigator Physical Therapist 15 5

Survivorship Clinic Facilitators Oncology Nurse Navigator Assess, support, educate, review NCCN guidelines, complete and review the survivorship treatment summary and care plan, provide referrals, and reinforce physician follow-up Physical Therapist PT/OT assessment, review FACT-G document, provide recommendations for therapy, perform lymphedema measurements, return to work readiness, suitability for exercise screening, exercise and wellness program 16 Survivorship Clinic Facilitators Dietitian Dietary education, nutritional counseling, resources, recipes Sharing and Caring Representative Breast cancer education, resources, and support Integrative Medicine Representative Therapeutic massage, guided imagery, other services as needed Social Worker Financial resources, support groups, counseling 17 Following the Clinic The patient receives assistance with referrals and appointments The patient is referred to their appropriate treatment team physician for follow-up needs The patient receives a thank you letter and a copy of their treatment summary care plan The patient s oncology treatment team, PCP and OB-GYN receive a letter and copy of the treatment summary care plan The patient is encouraged to visit the ONN as frequent as needed for ongoing support 18 6

Fabulous Feedback! Looking around at all of you here I know that I am truly cared about. I feel better today just knowing that there are so many resources available for me now that I am finished with treatment. Beaumont is top notch! What an incredible program. This was great. I wish that my mother would have had this same opportunity when she was sick. Thank you for spending this time with me. I really am going to be alright. 19 The Key Elements of the SCP Demographic Information Diagnosis Pathology / Grade / Stage Genetics Personal and Family History Surgical Intervention Chemotherapy / Endocrine Therapy Radiation Therapy Post Treatment Concerns Recommendations for Follow Up Preventative Measures Cancer Surveillance Legal clause 20 The Key Elements of the SCP Legal clause: This is a Clinical Summary and Care Plan, to be used as a guide. It is NOT a legal medical record. Should you require your medical records, please contact your physicians office(s) and/or hospital medical records. 21 7

Survivorship Care Plan Templates - American Society of Clinical Oncology - CANCER.NET 22 Survivorship Care Plan Templates - Memorial Sloan Kettering - MSKCC.ORG 23 Survivorship Care Plan Resources American Society of Clinical Oncology Journey Forward National Comprehensive Cancer Network LiveStrong Careplan Powered by Penn Medicine s OncoLink Memorial Sloan Kettering Cancer Center Care plan templates, guidelines for breast and colorectal cancer follow-up Tool for developing care plans based on ASCO recommendations Disease-specific treatment follow-up guidelines Registration is required, but access to these guidelines is free. Patients can develop their own care plan to be reviewed by their healthcare team Treatment summary and care plan - MSKCC.ORG 24 8

Delivery of the Survivorship Care Plan Upon completion of treatment, the oncology nurse navigator: completes the document reviews the document with the patient, and makes any necessary changes distributes a copy of the completed document to all of the patient s oncology treatment providers, the PCP and the patient documents in the patient s chart that the patient has received the document (*or declined) 25 Documentation Samples I met with this patient one on one during her Breast Cancer Survivorship Clinic visit. I provided her with resources, encouragement and emotional support. We discussed the importance of achieving her personal survivorship goals, and resources that are available to her. I reviewed the NCCN guidelines for breast cancer survivorship. She verbalized understanding of the recommendations for continued visits with her treatment team (breast surgeon, medical oncologist and radiation oncologist) at intervals that provide optimal surveillance. I reviewed her treatment summary and care plan, and answered all questions to her satisfaction. She, along with her primary care provider and her treatment team will receive a copy of this document. She expressed the following post-treatment concerns: ***. I provided her with non pharmacological interventions, and referred her to her respective treatment team providers. We reviewed the importance of incorporating exercise and a healthy diet into her lifestyle. She verbalizes that she is able to complete her ADLs without difficulty, and participates in the following enjoyable activities ***. She was encouraged to meet with me at any time with further questions/concerns/support needs. 26 Documentation Samples Upon completion of *** cancer treatment, a survivorship care plan has been completed for this patient with the most current information available to date. I contacted this patient in an effort to deliver *** cancer survivorship care plan. This patient has declined all opportunities (clinic/one on one ONN visit/telephone consultation) at this time. This document has been routed to the patient's PCP and oncology treating physicians. *** was encouraged to contact me at any time for a thorough review of this document, ongoing support and resources. 27 9

Beaumont Hospital, Troy Management Engineering Start Process Process Step Forms Decision End Process Change To Be Made Process Change Completed Description: The process of seeing a patient in the survivorship long term follow up clinic following their oncology treatment Nurse Navigator Suite 350 Clerical Staff Contacts: Dr. Brown, Angela DeLaere, Tom Lanni, Lisa Muma, Jeanne Parzuchowski, Dr. Stromberg, Ryan Wood, Reyna Colombo, Laurel Martinez, Lisa D Andrea, Gail Elliott-Patricolo, Kathy Warzybok Clinic Participants 10/19/2017 How we achieved it In an effort to provide our oncology patients with the most optimal survivorship outcomes, it is imperative that we collaborate with one another to build strong working relationships. 28 MISSION: The Cancer Survivorship Program partners with patients, families and their healthcare Beaumont Health System, Oncology Version: 32 providers to promote optimized health and healing of mind, body and spirit. We support and Updated: March 30, 2017 Survivorship Program Model empower patients through integrative practices and education before, during and beyond treatment. Reviewed: March 30, 2017 Multi- Disciplinary Clinics Groups/ SW/ School Follow up w/ Clinical Recreatio Cancer Including: Behavioral Support Referring Summary & Survivorship Primary Care Neurology n Therapy Orthotics Physician & Survivorship Clinics Parenthood & Fertility Psychology & PCP Care Plan Endocrinology Orthopaedics Testing and Educational Cardiology Pulmonary Rehab Equipment Pediatric Late Effects Programs Gynecology Audiology Services Rehab Follow Up Sexual Health Nephrology/Renal (PT/OT/ Oncology Others as needed Outpatient Link with SP) Residency Pediatric Survivorship Therapy ONNs, Program Long Term Exercise & Follow up Genetics and Acute Care Wellness Clinic Resource Cancer Peer-to- Silver Therapy Program Pediatric Long Term Center(s) Resource Peer Speech Linings Services Rehab Centers Support Pathology Follow up Support Groups Sharing Palliative Workability Caring and Care Oncology Psychosocial Spiritual Rehabilitation Support Care Cancer Program Referrals: Survivorship Research Psychosocial prof- Program Community Fatigue essionals Education Assessment The Patient is the Social Healing Breast & Referrals Center of All Work Arts Cancer We Do PT and/or OT Patient Consultation/ Nutrition Surveillance Program Screening Program Navigation Process Coordination Genetics Patient referral to program Referrals as needed (Naturopaths, Weight Control One-on-one Center, etc.) Consults with Dietitian Seminars / Lectures Online Resources and Classes Nutrition and Cooking Classes (TR & GP) Integrative Smoking Medicine Cessation Clinical Field Trips Referrals Trials i.e. Market IT (RO) Palliative Care Clinical Massage Therapy Scar Therapy Financial Acupuncture Lymphatic Massage Assistance Naturopathy Indian Head Massage Referrals Community Home Care Guided Imagery Hydrotherapy Groups & Services / Reflexology Cranial Sacral Therapy ACS Hospice Reiki Energy Balancing M.D. Consults Beaumont Hospital, Troy Management Engineering (REW) Page 1 of 1 29 Breast Cancer Survivorship Clinic: Troy Version: 9 APPROVED Last Edited: March 10, 2016 Flow for 3 Patients/Clinic Pre-clinic documents: - Welcome letter - Quality of life assessment: FACT-G Clinic preparation documents: - Clinical summary and Care plan Patient referred by physician or self Patient registered and scheduled for clinic via WCRC WCRC Nurse Navigator or Clerical connects with patient by mailing or emailing pre-clinic documents to patient for completion prior to clinic (to bring with them) and calls for follow up as needed Nurse Navigator (NN) prepares for clinic by pulling together forms, creating clinical summary & care plan and preparing for day of clinic. Discuss care plan with referring physician as appropriate Clerical/NN communicates patient list and information to clinic participants Monday before Thursday clinic Clerical/NN calls patients to remind about clinic and paperwork Patient arrives in WCRC; Clerical staff greets patient, collects forms, checks if FACT-G completed and provides any paperwork Physical Therapist provides screening for needs and recommendations (including back to work) (will follow up with physician for therapy prescription if needed) and reviews FACT-G (paper) and documents score in clinic note. PT/OT prescription form completed brought to PT/OT clerical to fax and track. Nurse Navigator provides: (1) individualized clinical summary & survivorship care plan for late effects from medications, radiation and/or surgery (2) education and information packet (3) communication regarding follow up testing and services as needed following NCCN guidelines for surveillance communicate back to appropriate physician for follow up Individual Sessions (Suite 350) [12:30pm-1:30pm] Clerical staff checks Patients meet with patient in and escorts to Nurse Navigator and exam rooms; Asks Physical Therapist patient to complete individually FACT-G if not done (3 SURVIVORS) already Rehabilitation (PT) and Nurse Navigator and Nurse Navigator huddle Physical Therapist to discuss cases and regroup during and/or approach (Suite 350 at end of clinic small conference room) Group Education Session (WCRC) Social Worker [11:30am-12:30pm] provides group education re: psychosocial support Integrative Medicine staff provides tour of Integrative Medicine department then staff provides escorts patients to education session Suite 350 Dietitian provides group education re: nutrition Sharing & Caring staff provides education session Clinic documents: - Education/Information - WCRC referral form - PRA/SRA - Weight loss info - Fertility info - Genetics info - Consent form - Business cards - Integrative Medicine Guided Imagery CD - ACS referral form (if needed) - NCCN guidelines (Breast Cancer Follow up Plan) - Brochures: ACS, Integrative Medicine, Silver Linings, Naturopathic Medicine, Exercise & Wellness, Life After Treatment, Choices for Good Health, Sharing & Caring, Spiritual Care Clerical staff NN and all clinicians Clerical staff checks scans in all forms document clinic in Troy out patient and from clinic Survivorship MDC Note provides satisfaction (including FACT- (ONC TR BREAST survey G) SUR CLIN) in Epic WCRC Clerical provides FACT-G forms back to PT/OT during/after clinic NN to forward clinical summary and care plan to referring physician(s) as needed Patient schedules and completes follow up testing and any other support services desired (nutrition, counseling, resource center information, integrative medicine, rehab) Patient follows up with physicians as appropriate Legend: Page 1 of 1 30 10

Barriers to Implementation Lack of resources Lack of funding Time constraints Lack of supportive structure Lack of standard processes Disengaged leaders or staff 31 Empowerment A well developed survivorship program will meet the I would like to encourage all of you to empower yourselves! Identify your standards personal goals of your and address institution, the barriers and help that your are disrupting patients to the achieve quality the of most your optimal life as a survivor! quality of life. Through our survivorship programs, classes, support services and physician visits, help is available! 10/19/2017 32 Questions If you or anyone that you know could benefit from oncology resources and support Please visit me in the Wilson Cancer Resource Center. 248-964-3432 Thank you! 33 11

References American College of Surgeons. Accessed 17 April 2017. Cancer.Net. Accessed 17 April 2017 "Comparison of CoC and NAPBC Survivorship Standards." Oncology Nursing Society. https://www.ons.org/sites/default/files/comparison_coc_napbc_survivorshipstandards.pdf. Accessed 22 April 2017. "NAPBC Standards Manual 2014 Edition." American College of Surgeons. https://www.facs.org/~/media/files/quality%20programs/napbc/2014%20napbc%20standards%20manual.ashx. Accessed 8 May 2017. National Comprehensive Cancer Network. Accessed 3 February 2017. "Online Resources for Survivorship Planning." Memorial Sloan Kettering Cancer Center. https://www.mskcc.org/referringphysicians/survivorship/survivorship-care-plan. Accessed 1 May 2017. "Survival Statistics." National Cancer Institute. https://seer.cancer.gov/statfacts/html/all.html. Accessed 23 April 2017. Wilson, Ian (Senior Corporate Counsel), Legal Affairs. Beaumont, Troy. Wood, Ryan (Manager) Management Engineering and Kaizen Improvement. Beaumont, Troy. 34 12