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Third Annual Early Age Onset Colorectal Cancer Symposium - Finding The Ideal State Of Wellness


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An Interactive Discussion On Key Issues Affecting Young Adult Colorectal Cancer Patients and Their Caregivers
Powered By Our Survivor Community and Their Families

Published in: Health & Medicine
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Third Annual Early Age Onset Colorectal Cancer Symposium - Finding The Ideal State Of Wellness

  1. 1. Introduction and Overview Dr. Thomas K. Weber MD FACS Course Director and Host Professor of Surgery, State University of New York at Downstate President and Founder Colon Cancer Challenge Foundation
  2. 2. The New York Times February 28, 2017
  3. 3. Siegel et al JNCI March 1, 2017
  4. 4. Incidence trends by age: 50+ versus 20-49 Source: SEER 9 delay-adjusted rates, 1975-2012; 2-yr moving average. 0 2 4 6 8 10 12 14 Men Women 51% since 1994 0 50 100 150 200 250 300 Incidencerateper100,000 Men Women Ages 50+ Ages 20-49
  5. 5. Increase is confined to the left side 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 5 1975-77 1980-82 1985-87 1990-92 1995-97 2000-02 2005-07 2010-12 Incidencerateper100,000 2.6 in 1991 4.8 in 2012 Source: SEER 9 delay-adjusted rates, 1975-2012; 3-yr moving average. Distal colon 2.1% annually since 1994 Rectum 2.7% annually since 1991 Proximal colon
  6. 6. Trends in young adults by 10-year age group 40-49 1.9% annually since 1994 30-39 2.2% annually since 1988 20-29 3.8% annually since 1987 0 5 10 15 20 25 Incidencerateper100,000people 0 0.5 1 1.5 2 2.5 20-29 years Source: SEER 9 delay-adjusted rates, 1975-2012; 3-year moving average. 20-29 years 6% 30-39 years 20% 40-49 years 74%
  7. 7. FUTURE TRENDS: US COLON & RECTAL CA BY AGE GROUP A Colon Cancer Rectal Cancer
  8. 8. Siegel et al, Journal of the National Cancer Institute (2017) 109(8): • “From 1989-90 to 2012-2013 the proportion of rectal cancers diagnosed in adults younger than age 55 doubled from 14.6% to 29.2%. Compared with adults born circa 1950, those born circa 1990 have double the risk of colon cancer and quadruple the risk of rectal cancer. As nearly one-third of rectal cancer patients are younger than age 55, screening initiation before 50 years should be considered.”
  9. 9. Early Age Onset Colorectal Cancer A 21st Century Cancer Control Challenge • What do we mean by EAO CRC? • CRC incidence in the US? • Is EAO CRC a major problem? Or not really? • Specific Clinical Challenges of EAO CRC • QOL Challenges • What is causing the increase in EAO CRC • How can we reduce EAO CRC Incidence, Morbidity and Mortality • What can CGA, InSiGHT and others do to contribute to these efforts • The EAO CRC Annual Summit
  10. 10. The Impact of Young Adult CRC • Approximately 10% of the 140,000 CRC cases / year in the US • 14,000 cases of CRC diagnosed in individuals <50 in the US per year • This exceeds the annual incidence of: • Hodgkin Lymphoma: 8,500 • Acute Lymphocytic leukemia: 6,600 • Chronic Myeloid Leukemia: 8,200 • Cervical Cancer: 13,000 (Noted by Rebecca Siegel JNCI 2017)
  11. 11. Siegel et al, Journal of the National Cancer Institute (2017) 109(8): • “From 1989-90 to 2012-2013 the proportion of rectal cancers diagnosed in adults younger than age 55 doubled from 14.6% to 29.2%. Compared with adults born circa 1950, those born circa 1990 have double the risk of colon cancer and quadruple the risk of rectal cancer. As nearly one-third of rectal cancer patients are younger than age 55, screening initiation before 50 years should be considered.”
  12. 12. The 2017 3rd Annual EAO CRC Program • Multiple (many!) Survivor discussion forums, surveys and conference calls! • Michael’s Mission & the Raymond Foundation • The Colon Cancer Alliance • Fight CRC • Colon Town • Drs. Peterson, Woodard & You, MD Anderson Cancer Center • MSKCC (Too numerous to list!! Thank You All!!) • Danielle Ivarone & the NYU Langone Perlmutter Cancer Center!!! • AliveAndKickn It Takes Guts InSiGHT CGA & NCCRT!!!!
  13. 13. The COVINA Group March 11th, 2017 NYC T. Weber MD for the Young Adult CRC Research Consortium
  14. 14. The “Other Agenda” For EAO CRC 2017: Based on the Covina Group Discussions • To come to a consensus on the top priority Action Items: Screening Guidelines : Family Health History : Earlier Diagnosis of the Symptomatic Patient : The Causes – “The Epi Challenge” • To lay out a road map of the constructive “Next Steps we plan to take. • Build on the unique to date awareness prompted by Rebecca Siegel’s article and the media attention it has received e.g. NY Times article • Launch the formation of the Young Adult CRC Research Consortium. • The COVINA Declaration? • Support tools for patients and their Care Givers: The Provider Buddy “App” for Patients, Care Givers & Providers T. Weber MD for the Young Adult CRC Research Consortium
  15. 15. Finding the Ideal State of Wellness Moderated By Susan K. Peterson PhD MPH Course Co-Director Professor of Behavioral Science The University of Texas MD Anderson Cancer Center
  16. 16. Psychosocial Support After an EAO-CRC Diagnosis Susan K. Peterson, PhD, MPH Professor Department of Behavioral Science @S_K_Peterson Early Age Onset Colorectal Cancer Symposium March 12, 2017
  17. 17. Integrating psychosocial health care into cancer care and survivorship Institute of Medicine (2008) • Psychosocial support services and interventions are important part of cancer care • Enable patients, their families, and health care providers to optimize biomedical health care • Manage the psychological, behavioral, and social aspects of cancer and its consequences so as to promote better health and quality of life Health and Medicine Division (HMD), formerly IOM, National Academies of Science, Engineering and Medicine, 2008
  18. 18. Standard to improve psychosocial care for cancer survivors Health and Medicine Division (HMD), formerly IOM, National Academies of Science, Engineering and Medicine, 2008
  19. 19. Finding the Ideal State of Wellness Psychosocial/Psychological Support(s) Allison Rosen MS Dan L. Duncan Cancer Center Baylor College of Medicine Stacy Hurt MHA MBA UPMC Integrative Oncology Zana Correa NP-BC Memorial Sloan Getting Cancer Center
  21. 21. Some challenges in meeting psychosocial support needs in EAO-CRC • Recognize specific needs in EAO-CRC – Psychological well-being, feeling different, cancer & health info needs, work/school, family, peer & social relationships, financial & insurance, recurrence fears, post-treatment adjustment • Coping at each phase – Diagnosis: information, relational interactions – Treatment: taking action, control, adaptation – Survivorship: finding normalcy, long-term impacts • Reaching EAO-CRC survivors – > 70% receive care in community settings, outside of academic medical centers – Rural areas: 20% survivors vs. 3% of oncologists – Recognizing diversity • Defining where to start and what to do
  22. 22. PSYCHOSOCIAL/PSYCHOLOGICAL SUPPORT • Initial Diagnosis: seek support • One on One support • Local groups • Imerman’s Angels • Hospital offer matching programs • Support groups specific for AYA: if they don’t have one create one • Psychologist or Psychiatrist: No shame
  23. 23. ATTITUDE IS EVERYTHING Take a negative and turn it into a positive • Volunteer to help others to understand you are not alone • Focus on work and put all your energy into being your best • Positive attitude makes a huge difference
  24. 24. USING WHAT YOU LEARN • Use your experiences to help others: encourage screenings • Still attend Support group: can relate to those just starting their journey • Serve on councils to make change Young Adult Advisory Council Patient and Family Advisory Council Steering Committees
  25. 25. MY NEW NORMAL • Helping others continues to be a source of • Growth • Positivity • Healing Everyone’s toolkit will be different
  27. 27. THANK YOU! Allison Rosen Baylor College of Medicine Dan L. Duncan Comprehensive Cancer Center Office of Outreach and Health Disparities
  28. 28. Mental Health Along the Cancer Continuum: Staying One Step Ahead STACY HURT, M.H.A., M.B.A.
  29. 29. WE ARE
  30. 30. Early Age Onset CRC Roles and Responsibilities • Caregiver (children, spouse, parents, pets) • Partner (sex, intimacy, dating, fertility) • Employee • Friend • Us (coach, drummer, volunteer, scrapbooker, wine aficionado)
  31. 31. Early Age Onset CRC Feelings • Loneliness / Isolation (Am I the only one?) • Anger / Resentment (Why me?) • Vulnerability / Restriction (What can I no longer do?)
  32. 32. “Cancer Continuum" Initial Diagnosis (Depression) Beginning Treatment (Anxiety) Ongoing Treatment (Depression) Recovery (Anxiety)
  33. 33. Initial Diagnosis: Emotions • Fear of Unknown (Paralyzing) • Deep sorrow, shock, despair, grief • Regret • Panic • Desperation • GOAL > TO MOVE FORWARD
  34. 34. Initial Diagnosis: Tools • Support System 1. “Cancer Coach” 2. Doctor/Nurses 3. “Inner Circle” • Thought Replacement Therapy • Pharmacological Intervention
  35. 35. Beginning Treatment: Emotions • Fear of Transformation (Loss of Control) • Frustration • Reluctance • GOAL > TO MAINTAIN BALANCE
  36. 36. Beginning Treatment: Tools • Yoga / Movement / Exercise • Nutrition • Meditation / Visualization • Music Therapy / Art Therapy • Spiritual / Faith / Religious • Activities That Bring Joy
  37. 37. Ongoing Treatment: Emotions • Fear of Defeat (Competition) • Indefinite • Weary • GOAL > TO STAY RESILIENT
  38. 38. Ongoing Treatment: Tools • Adaptations / Accommodations • Thought Shift
  39. 39. Recovery: Emotions • Fear of Recurrence (Uncertainty) • Euphoria • Victory • Strength • Satisfaction • Doubt • GOAL > TO REMAIN VIGILANT
  40. 40. Recovery: Tools • Pay It Forward • Return to Work • Self Reflection • Evaluation / Assessment • Seek Therapist
  41. 41.
  42. 42. What is Survivorship?
  43. 43. What is Survivorship? – (NCI) beginning at diagnosis – (IOM) focuses on the post-treatment phase – (NCCS) includes family members/care givers • More than 15.5 million survivors in the US – Estimated to grow to greater that 20 million by 2026 – >1million colon and rectal cancer survivors in US today SEER Cancer Statistics Factsheets: Colon and Rectum Cancer. National Cancer Institute. Bethesda, MD,
  44. 44. Potential effects of colorectal cancer treatment • Bowel dysfunction • Bladder dysfunction • Fatigue • Peripheral neuropathy • Sexual dysfunction • Psychosocial issues • Fertility issues • Cognitive issues • Intimacy concerns/ body image • Risk for secondary cancers in radiation field • Employment / financial concerns
  45. 45. Survivorship Care
  46. 46. Survivorship Care
  47. 47. Survivorship Programs
  48. 48. 1497 3459 4562 6252 7589 8486 9480 9640 11139 13083 14294 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016* Adult Survivorship Clinics *Annualized
  49. 49. Components of survivorship care 1. Prevention of new primary and recurrent cancers/other late effects. 2. Surveillance for new cancers 3. Identification/ interventions for late effects of cancer and its treatment  Health promotion education  Treatment summary and care plan 4. Coordination of care between oncologist and primary care providers.
  50. 50. SurvivorshipTreatment Summary
  51. 51. Health Promotion / Education
  52. 52.
  53. 53. Interdisciplinary Referrals • Nutrition Counseling • Wound and Ostomy Nurse • Sexual Health Program • Clinical Genetics • Rehab Medicine • Dermatology • Integrative Medicine • Counseling Center • Smoking Cessation Colorectal Cancer Survivorship
  54. 54. What should patients know?
  55. 55. Importance of Follow-Up Care: • What is my chance of recurrence now? • How can I get a cancer treatment summary? • What tests will I need for surveillance of my cancer? • What other screening tests do I need to have done? • What about my family? Should they have colonoscopies? • Do I need a primary care provider? • Support groups? • What other resources are available ?
  56. 56. Education for Survivors: Resources
  57. 57. Education for Survivors: Resources
  58. 58. Education for Survivors: Resources
  59. 59. Education for Survivors: Resources
  60. 60. Conclusion • Increasing number of cancer survivors • Multidisciplinary care to meet complex needs • NP/PA led clinics successful model of care • Education for survivors and families • Final word for patients...Ask questions
  61. 61. Acknowledgements Department of Colorectal Surgery at MSK • Dr. Julio Garica-Aguilar (Chief of Colorectal Surgery) • Dr. JoseGuillem • Dr. Garrett Nash • Dr. Philp Paty • Dr. James Smith • Dr. MartinWeiser Program Director of Adult Cancer Survivorship • Stacie Corcoran MS, RN
  62. 62. Thank you
  63. 63. Integrative Medicine and Wellness Strategies Including Optimal Nutrition/Exercise/Wound Ostomy Vashti Livingston MS CWOCN DAPWCA Kimmel Urology MSKCC Ambulatory Division Toyoko Yasui, MSN RN OCN AHN-BC HWNC-BC CCAp White Plains Hospital Center for Cancer Care Suzanne Gerdes, MS, RD, CDN Clinical Dietitian/Nutritionist Memorial Sloan Kettering Cancer Center
  64. 64. Eat Well to Feel Well Suzanne Gerdes, MS, RD, CDN Clinical Dietitian/Nutritionist Memorial Sloan Kettering Cancer Center March 12, 2017
  65. 65. Magic Bullet?
  66. 66. Tip the Scale in the Right Direction 5 point decrease in BMI = 15% risk reduction for colorectal cancer
  67. 67. What Do I EAT? Red Meat Processed Meat Alcohol Added Sugars Variety of Plant-based Foods Fiber Whole Foods
  68. 68. Move More
  69. 69. Sleep and Stress Less.
  70. 70. Steps to Feel Well 1. Aim for a healthy weight. 2. Change the way you eat. 3. Move your body. 4. Spoil yourself with sleep. 5. Manage your stress.
  71. 71. Find More • Recipes – – – • Calorie and Fiber information – – – • Nutrition & Cancer Information –
  72. 72. Thank you! Questions?
  73. 73. INTEGRATIVE MEDICINE and WELLNESS STRATEGIES WOC Nurses (Wound, Ostomy and Continence) and Early Onset Colorectal Cancer Patients Vashti Livingston MS CWOCN DAPWCA www.
  74. 74. Objectives • Discuss the current role of the WOC nurse taking care of colorectal patients. • Identify howWOC nurses can partner with early onset colorectal patients and improve our role, impact, and support. DISCLOSURE: NO CONFLICTS OF INTEREST
  75. 75. Role of theWOC Nurse • Approximately 7600WOC nurses but only 40% take care of people with ostomies • There are differences in theWOC nurse’s time and availability with colorectal patients from institution to institution. • Stoma Site Marking (WOCN Society and ASCRS Position Statement on Preoperative Stoma Site Marking for Patients Undergoing Colostomy or Ileostomy surgery) JWOCN 2015. • A preoperative visit is preferred for the patient scheduled to have ostomy surgery for both assessment and education of the patient and their family about their future ostomy.This evaluation can help reduce postoperative problems such as leakage, fitting challenges, need for expensive custom pouches, skin irritation, pain and clothing concerns. Poor stoma placement can cause undue hardship and have a negative impact on psychological and emotional health. Proper placement of the stoma enhances patient independence in stoma care and resumption of normal activity. • Traditionally the WOC nurse would be present at the MD Informed Consent Visit and years ago this was in the operating room/hospital. Often the visit is rushed so teaching has to be modified. • ManyWOC nurses are using/exploring models such as pre operative ostomy group classes and online/virtual education (which is more suited for younger patients). Enhanced Recovery After Surgery (ERAS ) initiatives.
  76. 76. WOC Nurse Education for the Colorectal Patient: OSTOMY • Discussion about the types of ostomy (colostomy, ileostomy) and ostomy pouches – Disposable closed end pouches; drainable pouches of various sizes; transparent or opaque; with filters for gas and odor; stoma caps. – Manufacturers have sampling programs and provide WOC nurse support; financial support; distributors and coverage for supplies. • Management options with an ostomy – Pouching with modifications and accessories (desiccants, odor and gas control; lubricating gels; colostomy irrigation; diet and hydration. • Concealment of an ostomy and clothing – Clothing options; discussion about lifestyle, activity (exercise, swimming, work/career, travel, etc); body image changes and adaptation; pregnancy, children and family. • Intimacy with an ostomy – Concealment; tips; dating and disclosure; impact on sexuality. • Support – Colorectal support groups; online/virtual colorectal support groups; local ostomy support groups;Trained Patient to PatientVolunteers (UOAA model OstomyVisitor); online forums and blogs.
  77. 77. Concealment Garments For Men
  78. 78. Concealment Garments andTips
  79. 79. What’s • Google (on the smart phone during the visit) • Instagram • Blogs and Personal Stories (“Irrigation:Its Not Just For Crops Anymore”) • YouTube • Twitter #coloncancer;#ostomy; #colostomy • Facebook (The ColonClub) • Pinterest (Images) • Tumblr • DiseaseAwareness “ostomy selfies” • There is a problem where some websites have some outdated information on ostomies and lifestyle. • There is a need for slight revision of the websites with a task force of EOS colorectal patients and WOC nurses (our millennial and Generation X ) • Update our patient teaching materials. Use technology, more audio visuals, webinars,and our approach to working with younger patients (Isaac D JWOCN 2013) • Patient Portals: underutilization of secure server Working and What’s Not
  80. 80. Young, Diagnosed, Surviving Ostomy Selfie
  81. 81. Sharing:The Journey to Wellness
  82. 82. References • Altschuler A, Ramirez M, Grant M et al. The Influence of Husbands’ or Male Partners’ Support onWomen’s Psychosocial Adjustment to Having an Ostomy Resulting from ColorectalCancer. JWOCN 2009:36(3) 299-305 • Batalla, Mary GraceAnne P. Presence of Stoma Nurse and Quality of Life of ColorectalCancer Patients with Fecal Ostomy in the Early Post Operative Phase. European Journal of Cancer July 2015 S2;51:e31 • Cengiz B, Bahar Z. Perceived Barriers and Home Care NeedsWhen Adapting to a Fecal Ostomy: A Phenomenological Study. JWOCN 2017:44(1);63-68 • DanielsenAK, Soerensen EE et al. Learning to Live with a Permanent Intestinal Ostomy : Impact on Everyday Life and Educational Needs. JWOOCN 2013;40(4):407-412 • Isaac D. UsingTechnology for the Advancement of Patient Education. JWOCN 40 May 2013 • Kelly K, Noyes K, Dolan J et al. Patient Perspective on CareTransitions After Colorectal Surgery . Journal of Surgical Research June 2016(203) 103- 112
  83. 83. References • Kent D, Long MA, Bauer C. RevisitingColostomy Irrigation: AViable Option for Persons with Permanent Descending and SigmoidColostomies JWOCN 2015;42(2):162-164 • Klasnja P, PrattW. Healthcare in the pocket: Mapping the space of mobile-phone health interventions. JournalOf Biomedical Informatics 45 (2012) 184-198 • Li Chia-Chun. Sexuality Among PatientsWith a Colostomy: An Exploration of the Influences of Gender,SexualOrientation, and Asian Heritage . JWOCN 2009:36(3):288- 296 • Phatak ,UR, Li, LT et al. Systematic Review of Educational Interventions ForOstomates . Dis Colon and Rectum 2014;57:529-537 • SunV; Grant M; et al. Surviving Colorectal Cancer: Long-term, PersistentOstomy- SpecificConcerns and Adaptations. JOCN 2013;40(1):61-67 • Tallman N.J, Cobb M.D, Grant M, Wendel C.S,Colwell J, Ercolano E, Krouse R. Colostomy Irrigation: Issues Most Important toWOC nurses. JWOCN 2015;42(5):487-493 • WOCN Society andASCRS Position Statement on Preoperative Stoma Site Marking for Patients Undergoing Colostomy or Ileostomy Surgery JWOCN 2015 May- Jun:42(3):249-52 • Photos retrieved from: www.ostomysecrets(2/2017);;;
  84. 84. Toyoko Yasui, MSN, RN, OCN AHN-BC, HWNC-BC, CCAP Holistic Nurse Coordinator
  85. 85. Holistic Approach  Holistic approach: maximizes the benefits of conventional care, and, combined with complementary & integrative care, may lead to healing  Looks at the needs of a person as a whole: body, mind, spirit/emotions must be assessed and addressed.  To heal, rather than to cure  Caregiver’s role in this approach: a tool in the healing process
  86. 86. Patient Centered Care  Your Presence with Good Intention  Healing Environment  Communication WPH Nursing Professional Practice Model  Based in Nursing Theory:  Patricia Benner  Margaret Newman  Martha Rogers  Jean Watson  Elizabeth Barrett  Nightingale
  87. 87. Concept of Total Pain Total Pain Physical Social Spiritual Psychological
  88. 88. Pain Process  Four steps for treatment 1. Transduction (NSAIDs, Local Anesthetics & Anticonvulsants) 2. Transmission (Opioids, NMDA Antagonists) 3. Perception (Distraction, Relaxation, Imagery) 4. Modulation (Tricyclic Antidepressants, Opioids, GABA Agonists)
  89. 89. Pain management, Shortness of breath, Anxiety, and Depression  Try relaxation techniques: Guided imagery, Mediation, Deep breathing, Music  Use gentle Touch/massage, and Energy Healing  Aromatherapy  Excises, Stretching, Reposition  Use Ice, Heat, Warm blanket, and Fan  Exposure to natural light  Provide emotional support: Listen closely, provide reassurance in soft voice
  90. 90. What Does Holistic Care Program at White Plains Hospital Offer?  Provides evidence-based complementary and integrative modalities/therapies  2 Full time Holistic nurses  14 volunteers are trained in Healing Touch  Several bedside nurses who have been trained in Healing Touch and are part of the Holistic Nursing committee  Goals/outcomes:  Improve quality of life,  Manage symptoms (pain, anxiety, dyspnea, insomnia, fatigue, nausea)  And help individuals cope with illness and actively participate in their health care and healing
  91. 91. Modalities/Therapies WPH Provides  Relaxation (Breathing exercises)  Guided Imagery  Meditation  Reiki (Energy Healing)  Therapeutic Touch (Energy Healing)  Healing Touch (Energy Healing)  Gentle Touch/massage (‘M’ technique)  Aromatherapy
  92. 92. Background  In 2014 Holistic Nursing Care Program began  Followed by Healing Touch Program  Care for in-patient and out-patients at Cancer Center  Services offered to patients and caregivers, including staff  Referrals from any clinical personnel: MD, NP, RN, SW, PT, or/and patient/family member  No doctor’s order required
  93. 93. 0 500 1000 1500 2000 2500 3000 3500 total# referral average visit/month employee 2014 2015 2016 Numbers are rising!
  94. 94. Total Holistic Visits by Month 2016 0 100 200 300 400 500 600 Jan Feb Mar April May June July Aug Sep Oct Nov Dec
  95. 95. Magnet Exemplar  How Often Is Your Pain Well-controlled?  Pre-Intervention Data: Average of 61.8% of WPH patients responded “Always” to HCAHPS Patient Satisfaction Survey Question.  Interventions:  Implementing Holistic Nursing modalities to patients  Educating staff about Holistic modalities Care Committee Meeting  During Nurses Week more than 100 nurses experienced these Holistic modalities  Intervention Timeframe: March 2014 – July 2014  Post-Intervention Data: Average of 70% of WPH patients responded “Always” to the HCAHPS Patient Satisfaction Survey Question.  This represents 13.3% improvement in HCAHPS Pain Score.
  96. 96. WPH Pain Management HCAHPS Scores Jan-14 Feb-14 Mar-14 Apr-14 May- 14 Jun-14 Jul-14 Aug- 14 Sep-14 Oct-14 Nov- 14 Dec-14 How well was your pain controlled 61.5 62 64.2 65.2 70.4 71.8 65.7 72.3 65 69.6 78 64.8 0 10 20 30 40 50 60 70 80 90 Patient Satisfaction Mean How well is your pain controlled? “Always” Intervention March - July 2014
  97. 97. Evaluations at Cancer Center  50 patients completed (January through April, 2016)  #1 Energy Healing (Healing Touch, Reiki, TT)  #2 ‘M’ technique on Foot  #3 Relaxation techniques  Reasons for referral: to promote relaxation and well- being, and to manage stress, anxiety, pain, fatigue, insomnia and nausea  Did therapy help? “YES,” responded everyone.  How was the therapy? “Relaxing,” responded all, and “Feeling good, less stress, anxiety, pain, fatigue, and nausea,” and “sleep better, more energized.” “Calming, soothing, comforting, and supportive.”
  98. 98. Case 1: Treatment of anxiety at end-of-life  43 y.o female with end-stage colon cancer with metastases  c/o severe pain and high anxiety  Offered Guided Imagery with Energy Healing  Being at a beach, in England, at home, and smile of niece  “Guided Imagery and Energy Healing,” said Miss M., “helped me to relax and manage my anxiety.”  Occasionally her family joined in Guided Imagery, which offered them relief from being with the patient. Therapies were comforting for both the patient and her family.
  99. 99. Modalities to help outpatients with chemo-related symptoms  Foot ‘M’ technique:  Gentle foot touch/massage helped reduce discomfort from Chemo Induced Neuropathy  Evidence-based: Relief of chemotherapy-induced peripheral neuropathy with manual therapy (massage)  Energy Healing: Healing Touch/Reiki helped reduce anxiety and pain  Evidence-based: Relief of anxiety helped pain reduction in cancer care Cunningham JE, Kelechi T, Sterba K, Barthelemy N, Falkowski P, Chin SH. Case report of a patient with chemotherapy-induced peripheral neuropathy treated with manual therapy (massage). Support Care Cancer. 2011 Sep;19(9):1473-6. doi: 10.1007/s00520-011-1231-8 Jackson, E., Kelly, M., McNeil, P., Meyer, E., Schlegel, L., & Eaton, M. Does Therapeutic Touch help reduce pain and anxiety in patients with cancer? Clinical Journal of Oncology Nursing. 2008; 12 (1):113-120. Thrane, S. & Cohen, S. Effect of Reiki Therapy on Pain and anxiety in adults: an in depth literature review of randomized trials with effect size calculations. Pain Management Nursing. 2014 Dec; 15(4):897-908.
  100. 100. Holistic Approaches Can Help!  Help treat patients with Acute Pain before it becomes chronic using evidence-based techniques  Use less Opiates! Help reduce pain effectively  Allows patients to actively participate in their care and healing process Mehl-Madrona L, Mainguy B, Plummer J. Integration of CAM Therapies into Primary-Care Pain Management for Opiate Reduction in a Rural Setting. Journal of Alternative Complement Medicine, 2016 Aug; 22(8):621-6
  101. 101. ALTO Program at St. Joseph, NJ Alternatives to Opiates Program in the ED  Uses targeted non-opioid medications, trigger point injections, nitrous oxide, and ultrasound guided nerve blocks to tailor its patients’ pain management  Includes Complementary Therapies, Energy Healing, and live Harp Music  Spotlighted in National Media: addiction-with-holistic-healing-677449795529
  102. 102. Feeling Sooo Good!
  103. 103. The Future of Holistic Nursing Care at WPH  Expand Holistic programs  Continuity of Care  Participate in Nursing Research  Education  Patients, Caregivers, and Staff  Self Care  Patients, Caregivers, and Staff  Planting a holistic seed ….
  104. 104. Support Systems and Resources for Caregivers Michael Sapienza Chief Executive Officer Colon Cancer Alliance Martha Raymond MA CPN Michael’s Mission, The Raymond Foundation
  105. 105. You’re never too young for colorectal cancer
  106. 106. • Bring awareness to the increasing trend • Focuses on highlighting the most up to date research, commemorating patients, and sharing their stories. – Young and Brave Survey • June 2016 • 992 responses
  107. 107. Survey Results
  108. 108. What were you told you had before being diagnosed with CRC? Results Anemia Hemorrhoids Result of Childbirth Appendicitis Gynecological Issues Other 30.5% 38.75% 6.15% 13.16% 50.68% 3.57%
  109. 109. At what stage were you initially diagnosed? • - Stage 0 • - Stage I • - Stage II • - Stage III • - Stage IV • - Don’t know • - Don’t remember 8.8% 20.93% 41.56% 25.18% 0.3% 1.52%1.72%
  110. 110. Survey Responses • 57% of respondents were diagnosed between the ages of 40-49 • 50% felt like their symptoms were ignored because of their age • 44% felt that their diagnosis was delayed because of their age • 40% felt that their doctor did not have proper knowledge of young onset colorectal cancer
  111. 111. Survey Responses • Experiencing the challenges of raising a family and being a parent, while also undergoing treatment – I was 36 at diagnosis, stage IIIc, with 4 kids under 6 years old. It was hard to manage it all with such young kids. • Financial issues, including insufficient or lack of health insurance – Losing our house due to cancer bills even with insurance. Still trying to regain credit so we can buy again.
  112. 112. Survey Responses • Having to quit or take a leave of absence from school or work, causing education and career gaps on a resume – Fear about finding employment with the gap in my resume, anxiety about needing restroom visits…during networking and job interviews. • Challenges involving fertility and the ability to carry a child – The cancer had destroyed both my ovaries by the time it was finally found…my husband and I can now not have children.
  113. 113. Action Items • Better tools to assist the medical community • Recognizing symptoms • Recommend diagnostic testing • National education campaign • Research into biomarkers and other biological differences or quality of life studies • Support services specifically for those diagnosed under age 50
  114. 114. CCA Chris4Life Research Program Survey • Medical Advisory Committee • Additional Researchers • Patiient & Survivor Community Findings Concentrate efforts on: • Young onset • Precision medicine • Development of better mechanisms for pre-disease and early diagnosis Program Goal Develop and implement a peer- reviewed program that offers grants in basic, translational and clinical research to researchers at varying career levels. To this end, the Colon Cancer Alliance Strives to advance its goal toward a cure for colon cancer.
  115. 115. CCA Chris4Life Research Program • 2017/2018 Grants Timeline – Young Onset Grants • $100,000 • RFP Distribution (June) • Grant Deadline (8/31) • Award Distribution (January 2018) – Precision Medicine & Pre-Disease/Early Diagnosis • RFP Distribution (October) • Grant Deadline (January 2, 2018) • Award Distribution (June 2018)
  116. 116. Thank You! Colon Cancer Alliance Helpline (877) 422-2030
  117. 117. Martha Raymond, MA CPN The Raymond Foundation, Inc. Early-Age Onset Colorectal Cancer Summit New York University Langone Medical Center - Perlmutter Cancer Center March 12, 2017 Copyright © 2017 The Raymond Foundation All rights reserved. No part of this presentation may be reproduced without written permission. The Caregiver Voice: Insights Into Caring For The Young Adult Colorectal Cancer Patient
  118. 118. Results of 20 month/nationwide ongoing study Start date Summer 2015 - Present Caregiver Demographics: 37% Male 63% Female 576 participants to date Focus groups were conducted in person & online with virtual meeting format Focus Group & Survey Findings
  119. 119. National Reach = 32 States & Counting
  120. 120. This Is Personal Becoming a caregiver at a young age as both my parents were diagnosed with colon cancer
  121. 121. 1% 4% 20% 22%34% 19% Under 25 25 to 29 30 to 34 35 to 39 40 to 44 45 to 49 Caregiver Age at Time of Patient’s Diagnosis
  122. 122. 2% 17% 45% 36% Stage 1 Stage 2 Stage 3 Stage 4 Patient: Initial Stage at Diagnosis
  123. 123.  Living a life of purpose – living in the present  Spirituality – reflection – devotion  Giving back – helping others - advocacy  Spending time with family and loved ones  Letting go of negative people & situations  Simple pleasures – nature – friends – pets  Being productive – service to others  Ability to be independent – healthy days  Taking time to ‘just be in the moment’ – gratitude What does a meaningful quality of life look like to you now? Patient & Caregiver Perspective – Joint Interview Question
  124. 124. What Is “Normal” After Cancer Treatment? 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” as it is 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. Your new “normal” may include making changes in the way you eat, the things you do, and your sources of support. From Facing Forward: Life After Cancer Treatment – National Institute of Health; National Cancer Institute, May 2014 What is the ‘New Normal’ ?
  125. 125. A paradigm shift A work in progress Part of a club you never wanted to join There is no new normal An opportunity Nothing about the new is normal A New Normal: Patient & Caregiver Insight
  126. 126. 22% 19% 16% 14% 14% 11% 4% Fear Regret Perspective Anger Anxiety Loss of Control Gratitude Initial Thoughts: ‘New Normal’
  127. 127. Caregiver Insight : “What one word describes how you are feeling right now?” Stressed Anxious Depressed Exhausted Frustrated Alone Overwhelmed Burned-out Angry Guilty Needed
  128. 128. Caregiver Insight: Healthcare Information & Support 89% Are equal partners in all healthcare decisions – “We discuss all options together, in private, before any decisions are made” 76% Did not receive adequate information/education on diagnosis/treatment options “Disappointing” & “Discouraging” 72% Keep track of all medical records, appointments, track side effects and treatment AEs 21% Are members of online support groups “Anonymous way to vent – but not healthy sometimes – inaccurate information & unsolicited advice” 16% Attend caregiver support groups (at least once) “No time after work, home, family – would attend more frequently if time allowed”
  129. 129. Caregiver Insight: Emotional Concerns 97% Stress & Anxiety - “Desperate for whatever might help” 89% Depression - “We hurt because we can’t take their pain away” 73% Lost - “Totally helpless – no control over the situation or outcome – Our young children need their Father” 55% Self Health Decline - “Can’t sleep, can’t focus – feel sad all the time ” 51% Withdrawn & Alone - “Difficult for friends, children and our extended family to understand ”
  130. 130. Caregiver Insight: Financial & Work Related Concerns 95% Financial instability – “Frightened for the future & daily uncertainty” 78% Employed Full Time – “Pulled in every direction – need balance” 71% 20+ hours per week spent on caregiving duties – “After work, caring for my wife and children, there is no time left for anything else” 52% Career/work performance has declined – “I know I am not the employee I used to be – and so does everyone else”
  131. 131. The needs are clear:  What can we do to better educate and raise awareness about young adult colorectal cancer?  What can we do to support and empower caregivers of young adult colorectal patients from diagnosis through survivorship?  What can we do to provide ongoing services to caregivers, family, children and loved ones of those affected by young adult colorectal cancer? Caregiver Resources: NYU Langone Medical Center; CancerCare; Colon Cancer Alliance; The Raymond Foundation; Cancer Support Community; and Fight Colorectal Cancer Call To Action
  132. 132. Survey, Focus Group and Town Hall Participants Symposium Co-Directors: Dr. Thomas Weber & Dr. Susan Peterson NYU Langone Medical Center, Perlmutter Cancer Center Colon Cancer Challenge Foundation Board of Directors, Cindy Borassi & Staff Title Sponsor:  Corporate & Individual Sponsors Contact Information: Martha Raymond MA, CPN © Copyright 2017 by The Raymond Foundation All rights reserved. No part of this presentation may be reproduced without written permission. Thank you!
  133. 133. Interested in Attending the 4th Annual EAO CRC Summit in 2018? Join our mailing list by visiting