Survivorship Program Examples


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Debra Hesse

Rachelle Portner, RN, BSN, BA

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Survivorship Program Examples

  1. 1. Survivorship Program Debra Hesse Survivorship Program Coordinator St. Mary’s Regional Cancer Center
  2. 2. St. Mary’s Regional Cancer Center Grand Junction, Colorado <ul><li>Many of our patients drive 2 or 3 hours for their cancer care </li></ul><ul><li>Approximately 13% of our patients are Spanish speaking only </li></ul><ul><li>We serve 1200 new cancer patients annually </li></ul><ul><li>Medical Oncology has 21,000 clinic visits per year (8 physicians) </li></ul><ul><li>Radiation Oncology has 16,000 clinic visits every year </li></ul><ul><li>(3 physicians) </li></ul>
  3. 3. The Vision of the Lance Armstrong Foundation <ul><li>In 2006 the Lance Armstrong Foundation funded 15 Survivorship Programs through the LIVE STRONG Survivorship Center of Excellence Network </li></ul><ul><ul><li>Dana-Farber Cancer Institute, Boston </li></ul></ul><ul><ul><li>Fred Hutchinson Cancer Research Center, Seattle </li></ul></ul><ul><ul><li>Jonsson Comprehensive Cancer Center, Los Angeles </li></ul></ul><ul><ul><li>Memorial Sloan-Kettering Cancer Center, New York </li></ul></ul><ul><ul><li>University of Colorado Cancer Center, Denver </li></ul></ul><ul><ul><ul><li>With a 5-year grant to pay the salary of a full-time Survivorship Program Coordinator </li></ul></ul></ul>
  4. 4. Community Affiliates of the LIVE STRONG Survivorship Centers of Excellence in Colorado Denver Pueblo Grand Junction
  5. 5. You probably already have a “Survivorship Program” <ul><li>Look around your cancer center and identify what you already have in place </li></ul><ul><li>Starting small builds a stronger foundation </li></ul><ul><li>What do you offer that does not involve medicine? </li></ul><ul><li>Take what you have and build on it </li></ul><ul><li>Find out who is “with you” and would benefit from a stronger survivorship program – social worker, spiritual care, one of your doctors, someone in leadership – and start building a “Resource Team” </li></ul>
  6. 6. Cancer Resource Center Knowledge Is Power <ul><li>Fill shelves with free educational literature: </li></ul><ul><ul><li>National Cancer Institute, Cancer Care, American Cancer Society </li></ul></ul><ul><ul><li> has “plastic Princeton files” </li></ul></ul><ul><li>Offer books that can be loaned out: </li></ul><ul><ul><li>Books on diet and nutrition are most popular </li></ul></ul><ul><ul><li> has library check-out cards and card pockets </li></ul></ul>
  7. 7. Cancer Resource Center <ul><li>Free hats and scarves (I have patterns that I can send) </li></ul><ul><li>Computer with internet access for patients </li></ul><ul><li>“ Book Exchange” shelf: donate and/or take books </li></ul>
  8. 8. Health Focus of the Month Educational Display <ul><li>Find a table or counter in a common area (lobby) and every month set up a display that will focus on top areas of concern, with posters and free educational brochures: </li></ul><ul><ul><li>Jan = bladder, Feb = kidney, Mar = colorectal, Apr = oral-head-neck, May = melanoma, Jun = cancer warning signs, Jul = blood cancers, Aug = gynecologic cancers, Sep = prostate and testicular, Oct = breast, Nov = lung, Dec = care giving and holiday stress </li></ul></ul><ul><ul><ul><li> has 4 panel boards; about $100 each </li></ul></ul></ul>
  9. 9. Puzzle Table <ul><li>Set up a table where visitors can work on a puzzle: it’s relaxing, and they are “doing” something </li></ul><ul><li>A volunteer glues them into a poster. After being on display for a week, I let anyone take them home </li></ul><ul><li>Set up a “Puzzle Exchange” near the puzzle table </li></ul>
  10. 10. Support and Education Groups <ul><li>Are any groups offered? </li></ul><ul><li>Are they successful (attended by 4 or more)? </li></ul><ul><li>Consider starting a group </li></ul><ul><ul><li>What is greatest need or your largest patient group (ie, breast, prostate) </li></ul></ul><ul><ul><li>What topic is most inviting – yoga, book club, smoking cessation </li></ul></ul><ul><ul><li>Who will lead – establish facilitator standards, for pay or volunteer </li></ul></ul><ul><ul><li>What time of day – during work day or after work, who is your audience </li></ul></ul><ul><ul><li>Where will they meet – on campus or off campus (can be less threatening) </li></ul></ul><ul><ul><li>How will you promote the new group </li></ul></ul><ul><ul><li>Commit to 1 year before you decide to stop meeting </li></ul></ul>MACHO – Men Against Cancer Helping Others
  11. 11. St. Mary’s Cancer Center Support and Education Groups <ul><li>Art Exploration: 2nd & 4th Monday, 4:00-5:30 pm </li></ul><ul><li>Breast Friends: 3rd Tuesday, 5:30-7:00 pm </li></ul><ul><li>Healing Hands (Therapeutic Touch): every Thursday, noon-1:00 pm </li></ul><ul><li>Leukemia, Lymphoma, & Myeloma: 2nd Thursday, 4:00-5:30 pm </li></ul><ul><li>Look Good, Feel Better: last Wednesday, 2:00-4:00 pm </li></ul><ul><li>MACHO Men: 2nd & 4th Wednesday, 5:00-6:30 pm </li></ul><ul><li>Living Well After Treatment: 3rd Monday, 4:00-5:30 pm </li></ul><ul><li>Relaxation Meditation: every Wednesday, 12:15-1:00 pm </li></ul><ul><li>Yoga Hour: every Monday, 5:45-7:00 pm </li></ul>
  12. 12. Consider Offering a Retreat <ul><li>Can be done easier than committing to a monthly group </li></ul><ul><li>Consider a 1-day retreat at an outdoor location that you can drive to in 30 minutes </li></ul><ul><li>We have done a retreat from 9 am to 3 pm with a 2-hour workshop, 2-hour lunch, and 2-hour workshop </li></ul><ul><li>Offer carpooling </li></ul>
  13. 13. Healing Canyons Retreats <ul><li>Still Life: photography, journaling, flower pounding, tai chi, water color, meditation, story telling, care giving; Men’s: Talk with a Doctor; Women’s: Sexuality and Intimacy </li></ul>
  14. 14. Art Therapy <ul><li>May 2007 – Lilly Oncology on Canvas: Expressions of a Cancer Journey </li></ul><ul><li>Art Exploration Class: twice a month with a different teacher and medium </li></ul><ul><li>Art Exhibits: every other month set up 25 easels </li></ul>
  15. 15. Volunteers Make the Wheels Go Around! <ul><li>Our volunteer force went from 6 to 40, over 5 years </li></ul><ul><li>Key is the right person to interview, train, and maintain them </li></ul><ul><ul><li>Our volunteers: are lay patient navigators, order and put away library materials, get lunch or warm blankets or drinks for patients, Pet Therapy Dog visitors, visit patients who are on their first or last treatment and give them their gifts (hand-made lap robe or Chinese take-out box), give free 30-minute massage, play the harp in the lobby, lead the yoga class, glue puzzles into posters, provide support for office staff, put up holiday decorations, and generally make everyone in the Cancer Center smile really big! </li></ul></ul>
  16. 16. Community Outreach <ul><li>Health Fairs, Skin Cancer Screening, Community Education Talks </li></ul>
  17. 17. What’s Next? <ul><li>We are actively working on transitioning into a Nurse Navigator model utilizing a distress scale to identify our patients that should access more services </li></ul><ul><li>We are actively working on the implementation of EMRs to include the data points of a treatment summary and care plan into our new software </li></ul><ul><li>We are trying to determine the best way to close the loop, so our patients can transition their care from their oncologist back to their primary care physician </li></ul>
  18. 18. St. Mary’s Regional Cancer Center a LIVE STRONG Survivorship Center of Excellence Community Affiliate of the University of Colorado Cancer Center Cancer Survivorship Program, member of the LIVE STRONG Survivorship Center of Excellence Network <ul><li>Debra Hesse, Survivorship Program Coordinator </li></ul><ul><li>[email_address] </li></ul><ul><li>970.298.2351 </li></ul>
  19. 19. Cancer Survivorship Services John Muir Health Meeting the Needs of Cancer Survivors; Throughout Treatment and Beyond Rachelle Portner, RN, BSN, BA Survivorship Nurse Navigator John Muir Cancer Institute
  20. 20. John Muir Health (JMH) Cancer Services <ul><li>Community-Based Hospital System </li></ul><ul><ul><li>Two Campuses: 705-bed capacity </li></ul></ul><ul><ul><li>Inpatient Cancer Treatment Services </li></ul></ul><ul><ul><li>Infusion Center </li></ul></ul><ul><ul><li>Surgery Center </li></ul></ul><ul><ul><li>Outpatient Radiation Oncology Services (~800 new patients per year) </li></ul></ul><ul><ul><li>Diagnostic Imaging </li></ul></ul><ul><ul><li>7 Nurse Navigators: </li></ul></ul><ul><ul><ul><li>Brain Tumor & Neuro-oncology </li></ul></ul></ul><ul><ul><ul><li>Gastrointestinal </li></ul></ul></ul><ul><ul><ul><li>Gynecological </li></ul></ul></ul><ul><ul><ul><li>Breast </li></ul></ul></ul><ul><ul><ul><li>Thoracic (lung/esophageal) </li></ul></ul></ul><ul><ul><ul><li>Survivorship </li></ul></ul></ul><ul><ul><ul><li>Urology </li></ul></ul></ul>
  21. 21. Distress Screening Survivorship Care Plan Treatment Summary Why is this so important?
  22. 22. Two Pivotal Reports on Survivorship Care <ul><li>2005: </li></ul><ul><li>Institute of Medicine released the report entitled From Cancer Patient to Cancer Survivor: Lost in Transition </li></ul><ul><ul><li>The report recommended that patients have a comprehensive care summary and follow-up plan at the end of treatment to reduce the possibility of getting lost in the transition from the care they received during treatment through the phases of their life or stages of their disease course </li></ul></ul><ul><li>2007: </li></ul><ul><li>Institute of Medicine released the report entitled Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs </li></ul><ul><ul><li>Emphasized the importance of screening patients for distress and psychosocial health needs, referral for appropriate provision of care, and systematic follow-up and re-evaluation </li></ul></ul>
  23. 23. Phase II: New ACoS/CoC Standards for 2012 <ul><li>Standard 3.2: Psychosocial Distress Screening </li></ul><ul><ul><li>The cancer committee develops and implements a process to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care as the standard for patients with cancer </li></ul></ul><ul><li>Standard 3.3: Survivorship Care Plan </li></ul><ul><ul><li>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. The process is monitored, evaluated, and presented at least annually to the cancer committee and documented in minutes </li></ul></ul>ACoS = American College of Surgeons; CoC = Commission on Cancer.
  24. 24. John Muir Health Survivorship Services; Goals <ul><li>Acknowledge that the end of treatment can be a time of both physical and psychological challenges </li></ul><ul><li>Develop a program to decrease psychological distress and address physical and practical side effects of treatment </li></ul><ul><li>To support each patient in achieving the highest possible quality of life after treatment </li></ul>
  25. 25. Survivorship Program Implementation (Phase I) <ul><li>Introduction to Survivorship Services reduces anticipatory distress </li></ul><ul><li>Quality of Life Assessment at end of treatment </li></ul><ul><li>Survivorship Care Plan to address patient’s needs </li></ul><ul><li>Patient meeting with Survivorship Nurse Navigator to review care plan </li></ul><ul><li>Treatment Summary from managing physicians </li></ul><ul><li>Patients may come in for further one-on-one assistance as needed </li></ul>
  26. 26. Lessons Learned <ul><li>Not all patients need full survivorship services, yet all patients take same time at exit appointment </li></ul><ul><li>Some assessments don’t reveal true needs of the patient </li></ul><ul><li>One-on-one was very important (one patient’s 3 is another patient’s 7) </li></ul><ul><li>Needs present during treatment phase are not addressed (no assessments, only clinical observation). Patients don’t always tell nurse/radiation therapist about needs </li></ul><ul><li>Survivorship assessments and care plan not getting to medical oncologists, primary care physicians </li></ul><ul><li>Treatment summary not getting to patient </li></ul><ul><li>Many physicians have very little understanding of needs of cancer survivors </li></ul><ul><li>Patients’ feelings of uncertainty and fear often override all else </li></ul>
  27. 27. Phase II: New ACoS/CoC Standards for 2012 <ul><li>Standard 3.2: Psychosocial Distress Screening </li></ul><ul><ul><li>The cancer committee develops and implements a process to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care as the standard for patients with cancer </li></ul></ul><ul><li>Standard 3.3: Survivorship Care Plan </li></ul><ul><ul><li>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. The process is monitored, evaluated, and presented at least annually to the cancer committee and documented in minutes </li></ul></ul>
  28. 28. Process Requirements <ul><li>Institutions can choose: </li></ul><ul><ul><li>When and who will perform the screening </li></ul></ul><ul><ul><ul><li>“ Pivotal medical visit” </li></ul></ul></ul><ul><ul><ul><li>Oncology care team </li></ul></ul></ul><ul><li>What screening tool to use </li></ul><ul><ul><li>( Must be a standardized, validated tool and confirms the presence of physical, psychological, social, spiritual, and financial support needs ) </li></ul></ul>
  29. 29. NCCN Distress Screening Tool NCCN = National Comprehensive Cancer Network.
  30. 30. How are you doing today? Patient: Date:
  31. 31. Process Requirements (cont.) <ul><li>Assessment and Referral Guidelines </li></ul><ul><ul><li>Patients whose screening reveals clinical evidence of moderate or severe distress (level 4 or more on distress scale, as defined by NCCN guidelines) will be evaluated by their oncology team (managing physician, nurse navigator, nurse, oncology social worker) and be connected to the appropriate referral for care </li></ul></ul>
  32. 32. Distress Screening I: Beginning of Treatment in Radiation Oncology
  33. 33. Distress Screening II: One Week Prior to Last Treatment in Radiation Oncology
  34. 34. Process Requirements (cont.) <ul><li>Documentation: </li></ul><ul><ul><li>Screening, referral/provision of care, and follow-up are documented in the patient medical record to facilitate integrated, quality care </li></ul></ul><ul><li>JMH Process: </li></ul><ul><ul><li>Documentation to made in the JMH electronic medical record and includes all Distress Screening documentation, Quality-of-Life Assessment, the patient’s Survivorship Care Plan </li></ul></ul>
  35. 35. Treatment Summary/ Care Plan for Distress Level <4
  36. 36. Treatment Summary/Care Plan (cont.)
  37. 37. Survivorship Patient Flow Identification of patient needs for Survivorship Services through distress screening Initiate Quality-of-Life Assessment to patients within 1 week of completion of treatment Consultation with Survivorship Nurse Navigator Initiation of Survivorship Care Plan Review assessments with patient, including acute and ongoing needs Treatment Summary Activation of JMH referrals and services for acute needs Referral to community-based resources as needed Cancer Support Community Other community-based resources Rehabilitation Services Psycho/Social Services Nutrition Services Introduction of survivorship services to patient by nurse navigator Managing Physician/Oncology Care Team Communication via Nurse Navigator and/or Patient Pastoral Care
  38. 38. Sample “Quality-of-Life Assessment for Cancer Survivors” (4 Domains of Quality of Life)
  39. 42. Survivorship Care Plan for Distress Level >4
  40. 43. Plan of Care <ul><li>What Is “Normal” After Cancer Treatment? </li></ul><ul><li>Those who have gone through cancer treatment describe the first few months as a time of change. It’s not so much “getting back to normal”; it’s finding out what’s normal for you now. People often say that life has new meaning or that they look at things differently now. You can also expect things to keep changing as you begin your recovery. </li></ul><ul><li>Your new “normal” may include making changes in the way you eat, the things you do, and your sources of support. This care plan includes resources and education to assist you on your road to recovery. </li></ul><ul><li>Plan of Care </li></ul><ul><li>The information presented here is derived from the “Quality-of-Life Assessment,” a patient- completed self-assessment of side effects following treatment. </li></ul><ul><ul><li>  Persistent Effects Following Completion of Treatment </li></ul></ul><ul><ul><li>1.   </li></ul></ul><ul><ul><li>2.   </li></ul></ul><ul><ul><li>3. </li></ul></ul><ul><ul><li>Other Needs Identified Following Completion of Treatment </li></ul></ul><ul><ul><li>1.   </li></ul></ul><ul><ul><li>2.  </li></ul></ul><ul><ul><li>3. </li></ul></ul>
  41. 49. Get the Word Out on Cancer Survivorship to Colleagues… <ul><li>Multidisciplinary Educational Events on Survivorship </li></ul><ul><ul><li>John Muir Health Nursing Education on Survivorship Care </li></ul></ul><ul><ul><li>John Muir Health Social Services Survivorship Education </li></ul></ul><ul><ul><li>California East Bay Oncology Nursing Society Education Day; Survivorship Care Presentation for San Francisco East Bay Nurses </li></ul></ul><ul><ul><li>Cancer Rehabilitation Dinner Lecture, September 2010: Speaker, Julie Silver, MD, Assistant Professor, Harvard Medical School, Physiatrist/Cancer Rehabilitation Specialist </li></ul></ul><ul><ul><li>Network Cancer Committee Reports </li></ul></ul><ul><ul><li>Task Force Formation and Meetings </li></ul></ul><ul><ul><li>Chart Rounds </li></ul></ul>
  42. 50. … and in the Community… <ul><li>Breast Cancer Survivorship Event: JMH Women’s Health Center: October 2009 </li></ul><ul><li>Colorectal Cancer Survivors Quality of Life Presentation: April 2010 </li></ul><ul><li>“ Survivorship 101” Workshop </li></ul><ul><ul><li>Offered bimonthly at The Cancer Support Community since 2008 </li></ul></ul><ul><ul><li>Average attendance 15 to 20 participants per workshop </li></ul></ul><ul><li>Relay for Life </li></ul><ul><ul><li>Survivorship Speaker: August 2010 </li></ul></ul><ul><ul><li>“ Fight Back!” Speaker: August 2011 </li></ul></ul><ul><li>“ Living Well Beyond Cancer” Conference: September 2010 </li></ul><ul><ul><li>Speakers, interactive sessions, and demonstrations focused on recovery after cancer treatment </li></ul></ul><ul><ul><ul><li>“ Living Well Beyond Cancer II” Conference projected for September 2012, funded by Safeway Foundation Grant </li></ul></ul></ul>
  43. 51. I have a dream…. <ul><li>All patients are screened for distress during and at the end of treatment </li></ul><ul><li>All patients receive a survivorship care plan that will enable them to achieve the highest possible quality of life after treatment </li></ul><ul><li>All patients feel supported at the end of treatment and that this can be a time of rejoicing </li></ul><ul><li>All patients have the tools and resources to put their cancer experience in a perspective that allows them to reclaim their lives and live well beyond cancer </li></ul>
  44. 52. Thank You Shell Portner, RN, BSN, BA Survivorship Nurse Navigator John Muir Cancer Institute 925-947-4462 [email_address]