Survivorship Clinics in Community Cancer Centers

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Survivorship Clinics in Community Cancer Centers Long-Term Survivorship Care after Treatment National Cancer Policy Forum of the National Academies of Sciences, Engineering, and Medicine July 25, 2017 Mark A. O Rourke, M.D., Medical Director Gina Franco ANP-C, MSN Center for Integrative Oncology and Survivorship Greenville Health System Cancer Institute Greenville, South Carolina 1

GHS Cancer Institute Demographics Clinical University Serving 6 Counties >3100 cancers diagnosed annually 10 Service Sites Biorepository Center for Integrative Onc/Survivorship Clinical Genomics Center FACT-accredited allo/auto transplant program Phase 1 Clinical Research unit NCORP site 316 Clinical Trials (280 adult, 36 pediatric) Treatment and Prevention Cancer Care Delivery Model 80 Cancer Specialists 500 Employees 2

Oncology Rehab Lifetime Clinics Counseling Smoking Cessation CIOS Destination Clinic MD-NP Visit Nutrition Counseling Genetics Music Therapy 3

South Carolina Cancer Alliance (SCCA) www.sccancer.org The SCCA consists of over 800 members who represent the state's medical community, academic institutions, nonprofit organizations, and various community groups. Workgroups include health equity, breast cancer, cervical cancer, colorectal cancer, lung cancer, prostate cancer, treatment and survivorship, health policy and advocacy, and a rural health initiative. The survivorship workgroup has been active with statewide participation and two annual evidence academies, with participation by small and large hospitals. 4

Cancer Support Community (CSC) www.cancersupportcommunity.org Comprehensive Support: Enhancing well-being through support groups, one-to-one connections, and development of community. Psychosocial and financial counseling (free) by telephone. Education: Empowering through classes, evidence based workshops and print materials. Healthy Living Programs: Improving quality of life through stress reduction, movement, nutrition and mindfulness. 5

Center for Integrative Oncology & Survivorship CIOS CIOS was established in June 2012 as a destination model with multidisciplinary team. Survivorship Care Plan delivery started in July 2012 with NP billable visits (E&M) using the Journey Forward SCP template. We have added lymphedema management, oncology rehabilitation, nutrition, social worker counseling, genetic counseling, a lifetime cancer surveillance clinic, and a smoking cessation clinic. In 2013, we adopted ASCO SCP template and developed disease focused, detailed SCP s with survivorship information pertinent to each major 6 cancer.

Center for Integrative Oncology & Survivorship CIOS In 2014, we changed timing of the visit to right after start of treatment. The cancer survivor can opt for a second SCP visit at the end of treatment. In 2014, we changed SCP s to a generic, one size fits all template, with the three page SCP s scanned in to EHR In 2015, we began to use the tumor registry data to populate many of the fields in the SCP. In 2016, our hospital implemented the Epic electronic health record. We opted to use our own SCP template and still scan in rather than use Epic SCP package 7

Additional Survivorship Services Onco-fertility referrals, patient seen within 24 hrs Cancer Screening: lung cancer, breast & cervical, and colon (also indigent programs) Adolescent and Young Adult (AYA) cancer clinic High risk clinic for cancer prevention and risk analysis, e.g., for persons who test BRCA positive Under development: Sexual health visit Spiritual navigation/integrating with community faith based organizations 8

CIOS STATUS REPORT Where Are We Now? 600-700 visits/month in CIOS 30-50 SCP visits monthly 45 minutes each About 50% of patients offered an appointment for a SCP visit opt to come in for the SCP visit. SCP clinic creates 2-4 referrals per patient for other CIOS services and many screening services No show/cancellation rates are similar to primary care. The value is not realized until patient comes in for visit SCP creation/monitoring for COC compliance is still time consuming. EHR products are still suboptimal.

Challenges for our cancer survivorship program Generating SCP s efficiently/large numbers Engaging Survivors Metrics Lesson Learned Wish list Sustainability Care Coordination Models of the Future 10

Electronic Treatment Summary Process (ETSP) Cancer Registry software report of cases Convert the report to an Excel file of cancer cases Mail Merge to a Word Document Template to create a group of TS/SCP s Complete and finalize each TS/SCP and enter into EMR 11

Survivors engaged to modify SCP process Satisfaction surveys create specific to survivorship Aggregate quarterly analysis reports disseminated to staff and leadership Review of results by CIOS helped identify change in process. An example is delivering SCP s at the beginning of treatment GHS Survivorship Registry IRB approved used for periodic questionnaires and focus groups 12

Evaluation tools used in CIOS/ What process and outcome measure have we used Evaluation Tools Satisfaction Surveys Focus Groups Staff feedback Referral sources Growth patterns Outcome Measures Growth Monthly visits No-shows Reschedules Referrals/patient Compliance with COC Screening compliance Participation in groups 13

Lessons learned about SCP delivery 2012 to 2017 One size does not fit all. Each survivorship visit needs to be patient specific, as each cancer survivor has a unique and specific personal experience. Cancer survivorship training and experience are essential to providing a quality SCP visit. A high level of detail and specificity in the TS/SCP are time consuming to prepare and distracting for the cancer survivor. Should the SCP delivery visit be at completion of curative therapy or at beginning of diagnosis and treatment? Each has pros and cons.

Lessons learned about SCP delivery 2012 to 2016 The content of the SCP visit has evolved with less emphasis on SCP document presentation and more focus on lifestyle strategies and follow-up. Focus on exercise, nutrition, weight control, and smoking deserve the greatest emphasis in order to reduce cancer risk and improve overall general health. Oncologist practice patterns vary even within the NCCN follow up guidelines. We no longer try to prescribe a follow up schedule but rather emphasize which clinician will be responsible for which follow up. 15

Lessons learned about SCP delivery 2012 to 2016 Psychosocial concerns are prevalent and deserve emphasis, e.g., management of distress. Many patient concerns revolve around non-cancer related issues Healthcare maintenance and screening are often neglected among cancer survivors, such that specific education and guidance is needed. Many cancer survivors lack primary care medical management to guide non-oncological healthcare. We often make referrals to establish primary care. 16

We wish that The value of SCP visit were realized by lay and professionals EHRs had state-of-the-art system to generate the SCP as a dynamic document and receive info from the cancer registry with electronic reports Tele-health visits were ready for primetime use and realistically reimbursable SCP visit were defined better in national guidelines not obscurely to be given immersed with other possible visits Barriers to mental health access to care and reimbursement in our community were lower 17

Sustainability of Survivorship programs Interdisciplinary knowledge & teamwork is critical Marketing with flyers and talking up Need staff with IT ability Billable model for MD/APRN visits APRNs are excellent for survivorship care Nurse navigators are extenders for providers Measure downstream referrals Physical therapy Smoking cessation Cancer screening tests i.e. colonoscopy 18

Care Coordination South Carolina Experience Interacting with PCPs Many patients do not have PCP s PCPs frequently willing to defer all issues to oncology Challenging to get patients establish or continue care with PCP EHR Works great if all in the same system Extra effort is required to reach PCPs outside of the system 19

Survivorship Care Models of the Future Embedded programs (smaller/satellite) clinics to compliment destination programs Tele-medicine will be important, e.g., for genetic counseling and other nonexam visits Self-management will be important utilizing credible advocacy organizations, such as Cancer Support Community and American Cancer Society Lifetime cancer surveillance clinics annual visits with the cancer survivorship NP that integrate with primary care. We need to triage long term followup. 20

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