Sue Bowman, RN, OCN, CBCN, MSW Leesa Mattingly, RN, OCN

1. 5 Steps to Better Navigation: Breast Cancer Navigation Breakout Session Sue Bowman, RN, OCN, CBCN, MSW Breast Oncology Nurse Navigator Wellspan Health, York Cancer Center

2. About the speaker… Breast oncology nurse for 16 years Breast cancer survivor for 18 years Breast cancer navigator for 9 years Developed successful survivor programs Published author Conducting nursing research in breast cancer survivorship Member of several breast oncology groups Certified in oncology and breast cancer care by ONS Enjoy being a navigator

3. Breakout Session Topics

4. What Is a Navigator ?

6. Translation – We Are “Cat Herders” Cat Herding - Persuading a group of independently minded people to go in the same direction

7. Dr. Harold Freeman “Navigators assure that individuals with cancer will receive timely diagnosis and treatment.”

8. Dr. Allan GibofskyProfessor of Public Health Weill Cornell Medical College “Breast cancer is a complex disease causing disruption in the physical, social, psychological, and spiritual aspects of caring. It is the role of the navigator to pave the way for these individuals to access the necessary information that will make the journey less fearful and more understandable.”

9. Barrier-Focused Definition Patient navigation is a barrier- focused intervention that has the following common characteristics: Provided for a defined period of time Has a start and end Targets the specific set of health services required Identifies barriers and reduces delays in accessing care Sara Koslosky Inova Health Breast Care Nurse

10. Is a Standardized Navigator Definition a Practical Goal?

11. Actual Value of a Navigator The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care.

12. Critical Question #1 How does a navigator develop this ability to guide patients around or through barriers?

13. Critical Question #2 How are barriers identified?

14. Critical Question #3 How does a navigator resolve barriers?

15. The answer is… …something you have used your entire professional career The Nursing Process Theory Developed in 1961 by Ida Jean Orlando Ida Orlando

16. The Focus of the Nursing Process The Patient Improve care by addressing the most pressing need first 5-step process

17. Things to Remember… This is a new process Use what you know works Nurses and other navigators can use Orlando’s Nursing Process Theory to resolve patient barriers – successfully Create your role and program to reflect your patients’ barriers Keep your role fluid Navigators have become important members of the oncology care team Navigation is a difficult task at best Nurse navigation is still developing Start small Be patient with yourself

18. 5 Steps to Better Navigation:Using the Nursing Process

34. Key Point: Implementation is NOT only your responsibility. You are NOT a “Guardian Angel.” You are a facilitator. Your patient is responsible for doing what he or she is able to do. The goal is to complete recommended care, create a partnership, provide tools for growth, and support the healing process.

41. Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation Case Study

43. Review medical record

44. Gather appropriate resource materials

45. Focus on rapport building

47. Elderly Case Study Mary: Physical Barriers 78 years old, post menopausal Thoraco-lumbar stenosis Arthritis Osteoporosis A-Fib Cataracts & bilateral hearing aides Thickness noted in left breast Invasive lobular carcinoma, ER+, PR-, HER-2 -, 4 cm., 3 positive nodes, 1 micro-mets

48. Case StudyMary: Emotional Barriers Depression Anxiety Isolation Spouse in long term care post recent CVA Reluctant to ask for help One son 200 miles away Accustomed to being in control of her life experiences

49. Case StudyMary: Support System Barriers No living siblings Spouse unavailable Son & family not local Attends Sunday church services Lives alone in family home Does not drive in “bad” weather or at night Limited circle of friends

50. Case StudyMary: Knowledge Barriers Unaware of community resources, including cancer center Incomplete understanding of medication use Impending information overload No personal experience with breast cancer No known family history Unfamiliar with screening, treatment, disease, survivorship recommendations Unaware of impact of treatment and healing issues

51. Case StudyMary: Financial Barriers Car is 15 years old Limited income Medicare & supplement health coverage Able to make ends meet at this time, no reserve Sporadic grocery shopping Ocassionally misses bill due dates 12 year old dog requires frequent vet appts Home repair ignored

52. Case StudyMary: Systemic Barriers Complex medical system Cottage industry of care Treatment may require an escort Provider communication relies on phone Treatment may require travel in poor weather or when dark

53. Elderly Case StudyMary: Personal Strengths & Resources Resourceful Determined Frugal Uses her small circle of contacts well Willing to help herself Enjoys learning new things Reads and questions health care information Asks questions on behalf of her spouse

54. Use the 5-Step Nursing Process Theory to Develop an Effective Strategy Assess Nursing diagnosis Plan Implement Evaluate

55. Barrier Ball ActivityRemember the Nursing Process Catch a Barrier Ball Recruit people near to you to formulate a way to reduce that barrier Take 2 minutes to develop your plan (Write it down) Pick one person to come to the microphone, state barrier and how to reduce this barrier

56. Transportation Barrier

57. Possible Transportation Approaches Ask patient for her ideas. Neighbors Public transportation programs Church groups Cancer center programs American Cancer Society Investigate hospital resources Establish a list of resources for navigator use

58. Financial Barriers

59. Possible Financial Approaches Ask her what help she needs first Refer to financial counselor, if available Contact local patient advocacy programs Refer to food and clothing banks Brainstorm with patient to find additional ways to economize Free Medicaid cell phone program Work with patient finance rep for available options Explore providers’ willingness to waive fees Pharmaceutical programs National patient advocate programs Establish a list of resources for your future use Be sensitive to privacy issues

60. Healthcare Barriers

61. Possible Complex Healthcare Approaches Offer to attend appointments for support, note taking, advocacy Explain steps before they happen Anticipate barriers Provide verbal and written information in increments Enlist help from PCP Be available for questions and concerns Collaboratively develop a way to be organized that matches her need Be prepared to repeat information and present it in different ways Establish a list of resources for your future use

62. Psychosocial Barriers

63. Possible Psychosocial Approaches Establish rapport and positive regard Explore adequate emotional support: counseling, medication Offer social work services Reinforce her strengths Explore her current relationship with her spouse Ask about provider gender preference Social Work 101: “Meet the patient where she is” Check your biases

64. Remember the 5 Steps of the Nursing Process Theory for Better Navigation Assess Gather information Use a tool Nursing diagnosis Identify individual and systemic barriers Plan Collaborative process Baby steps; don’t expect perfection Focus on personal strengths Don’t promise what you can’t deliver Be patient Implement “Assist” always; “do” only when your patient is unable Encourage independence Evaluate Do YOU have a knowledge deficit relating to her specific barriers? Do YOU have a comprehensive understanding of women’s developmental stages? Evaluation never ends and results in continual reassessment

65. The Multidisciplinary Navigation Team

66. The Multidisciplinary Navigation Team Nurses cannot do this alone Remember the cat herders? Multidisciplinary services are indicated for an optimal breast cancer experience You already have a team of people available to provide these services Volunteer vs paid employees Virtual vs centrally located team You can create a team

67. Interdependence:Making a Cheeseburger Independent Cheeseburgers Raise the cattle Butcher and grind the meat Bake the rolls Grow lettuce and tomato Make cheese & age it Grow trees, cut down, process for charcoal Time needed: years Interdependent Cheeseburgers Go to the grocery store Purchase hamburger, cheese, rolls, tomato, lettuce, charcoal, ketchup, mustard Return home & prepare Time needed: hours

68. Team MembersNonclinical Patient Navigators They can: Listen Access information Connect to support Encourage organization skill development Address cultural & language barriers They cannot: Provide medical information Give opinions about treatment Give opinions of healthcare providers Interfere with provider/patient relationship

69. Team MembersFinancial Counselor Locate Medicare, Medicaid programs Organizational programs for support Pharmaceutical programs Guide to economize lifestyle Assist with applications for services May be able to organize fundraising

70. Team MembersOncology Dietitians Counsel healthy nutrition through treatment Provide guidance for plant-based diet after treatment Provide nutritional supplements and reassurance Supply facts about alternative or unconventional diets

71. Team MembersOncology Social Workers Logical, essential, and necessary Assist with disability, FMLA, Social Security, Medical Assistance Connect to appropriate resources Facilitate mental healthcare Provide crisis intervention Offer patient and family counseling Provide support groups Support other members of the navigation team Psychosocial education

72. Team Members;Other Potential Members Research nurses Clergy Imaging personnel Radiation, surgical, medical oncology Complementary medicine providers Physical & occupational therapists Survivorship classes Support groups Community members Others?

73. The Puzzle of Assembling the Right Team Activity In 5 minutes: Find your color-coded puzzle piece Read your patient comment or list of team members Find the team member who matches your puzzle piece Decide how your team will address this barrier Can you add other resources or ideas? 3 teams may come to the microphone to share their barrier and describe team members’ actions

74. Focus on Psychosocial Assessment

75. Focus on Psychosocial Assessment What is distress? Any emotional issue which affects a person’s ability to Cope with disease, treatment, survivorship Make informed decisions Follow recommended treatment Breast cancer is a holistic experience Distress is best managed by using the “onion analogy”

76. Focus on Psychosocial Assessment Why is this important? 33% of all patients experience significant emotional distress 5% obtain help Breast cancer survivors: commonly experience distress which interferes with coping Psychosocial assessment will be required for cancer center accreditation Distress is one of the 3 most common barriers: Insurance & out-of-pocket expense Transportation Fear & emotions

77. Barriers Are Risk Factors for Distress Low income Less education Unemployed Young age Hispanic ethnicity Non-English speaking Treatment side effects Unstable support systems Preexisting mental illness Substance abuse Role confusion Endless number of perceived barriers ALL people have barriers

78. Focus on Psychosocial Assessment in Navigation: American College of Surgeons Commission on Cancer Continuum of Care Services Standard 3.2 Screening of all patients for distress & psychosocial health needs Provide referral, follow-up, and re-evaluation Minimum of 1 screening per patient Use of standardized tool Documentation General standards first published in 1930 to ensure quality cancer care New standards September 2011 Voluntary accreditation includes patient care improvements & outcomes through a team approach

79. Focus on Psychosocial Assessment in Navigation Institute of Medicine: Cancer Care for the Whole Patient Screen all patients Referral to appropriate psychosocial services Effective communication Identify barriers Design and implement a plan for care Coordinate care & support patients Reassess and adjust the plan of care National Comprehensive Cancer Network “Distress should be recognized, monitored, and documented, and treated promptly at all stages of the disease” Requires systemic follow-up Reassessment

80. Focus on Psychosocial Assessment The basics of the IOM, NCCN, and ACoS recommendations sound a lot like Orlando’s Nursing Process Theory

81. Nurse Navigator Initial Contact Remember: Use the 5-step Nursing Process Theory Be alert to the fluid nature of the process Use an assessment tool and document your findings Collaborate with your patient to develop a care plan Mental illness or instability may be exacerbated with diagnosis Self-report, observation, medication list Further assessment is needed Communicate with physician Use the nursing process with frequent reassessment as tool for maintaining support Refer to appropriate psychosocial support Use recommendations from IOM, ACoS, NCCN to guide your plan

82. Need for Assessment Is Evidence Based Will be required by ACoS CoC Standard 3.2 by 2015 for accreditation Research: Heilman & Lackey (1991), Kilpatrick et al (1998), Sanson et al (2000) High levels of unmet needs (barriers) Increase distress levels Decrease coping abilities Affect patient, family, caregivers, providers Complicate family support, hope, and a sense of the future

83. Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients Hospital Anxiety & Depression Scale Distress Thermometer Single verbal question Psychological Distress Inventory Combination Distress and Impact Thermometers Two verbal questions All tools comparable in accuracy Never a substitute for clinical assessment or management Choose a tool based on Acceptability Effectiveness Cost

84. Distress Thermometer Easy to use 20 seconds to complete Pencil & paper Scale 1-10 High specificity and sensitivity Provides specific areas of potential barrier for assessment www.nccn.org

85. Conference Stress Gauge Activity Find your Conference Stress Gauge Take 1 minute to complete this tool Share comments with the person next to you Did this tool evaluate your current stress level accurately? Could you use the NCCN Distress Thermometer for your patients?

86. Best Practices in Navigation and Survivorship

87. What Are “Best Practices”? Best Practices are generally accepted, informally standardized techniques, methods or processes that have proven themselves over time to accomplish given tasks Often based on common sense when no firm guidelines exist Best practices continue to evolve as change occurs

88. Why Are Best Practices Valuable? Used to maintain quality Used as an alternative to mandated, legislated standards Based on self-assessment Changeable and flexible Important aspect of accreditation standards

89. The key in adopting a best practice is being able to tailor it to your own organization’s needs

90. Current Best Practice Resources Design of Six Sigma (DFSS) Business model for redesigning existing or new processes Prioritizes customer (patient) needs Formulates specifications Integrates them into a program Aligns customer (patient) needs with provider services

91. Current Best Practice Resources Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC) Articles Templates Assessment tools www.accc-cancer.org

92. Current Best Practice Resources American College of Surgeons Commission on Cancer Standard Drafts 3.1 Patient Navigation 3.2 Psychosocial Distress Screening 3.3 Survivorship Care Plan http://www.facs.org/cancer/coc/cocprogramstandards2012.pdf

93. Current Best Practice Resources Published navigation research or literature review articles Professional organizations Regional best practice Classic best practice Orlando’s 5-step nursing process theory

94. Survivor Care Plans as a Best Practice The number of survivors is rising The number of medical oncologists is not Primary care physicians may be responsible for cancer surveillance Changes in breast cancer treatment occur often Coordination of care is imperative

95. Survivor Care Plans What are they? Useable documentation of treatment completed and plan for future Comprehensive record of diagnosis and treatment Patient-friendly and valuable to providers Includes treating providers & contact information Includes treatment identification, dose, duration, effects Includes services used Includes guidance for recovery and survivorship Includes surveillance recommendations, health maintenance Lifestyle changes

96. National Community Cancer Centers Program (NCCCP) Survivor Care Plan Four methods of care plan development Cancer registry populates treatment summary Nurse Practitioner led survivorship program using software for care plan Survivorship Navigator completing treatment summary Use online care plans such as: www.journeyforward.org www.nursingcenter.com/library/static.asp?pageid=721731732 www.livestrongcareplan.org Survivor care plans will be required for ACoS CoC Accreditation 2015

97. Successful Survivorship Program Initiation and Support

98. Why Are Survivor Programs Important for Your Navigation Program? Increasing number of cancer survivors requiring continuing care Better treatment Better follow-up Better science Better delivery Better professional education New phase in the cancer trajectory: Survivorship Longer life Patient demand Extension of traditional treatment Primary care physicians may not be familiar with late effects of diagnosis or treatment

99. What Survivor Programs Are Right for Your Navigation Program? Use the 5-step Nursing Process Assess: Find out what is needed Survey Focus group Interview patients & providers Practicality Cost Shareholders Nursing Diagnosis: Define needs in terms of patient barriers Examples Lack of adherence to hormonal therapy Poor appointment follow-up Fear about leaving active treatment Other?

100. What Survivor Programs Are Right for Your Navigation Program? Plan: Develop an interactive, engaging way to educate patients, meeting the needs expressed Content Adult learning styles Program providers, resources Funding Scope of practice Specific goals Team involvement Implement: Time to practice Try out your program ideas with an open mind Know that some components will be successful, some will need revision Build resource list

101. What Survivor Programs Are Right for Your Navigation Program? Evaluate: Look at your successes and failures Keep a list of what went well and what didn’t Develop a way to prove effectiveness of your program Readjust your program to enhance effectiveness Process is the key word Programs are never finished; open to change Make it fun for you and the people you serve Ideas are limited only to your imagination and creativity

102. Prescription for Living:Beyond Breast Cancer What: An 8-session interactive class for women who have been diagnosed and treated for breast cancer Women’s Intervention Nutrition Study, Chlebowski (2006) Nutrition Physical activity Stress reduction Information Taught by oncology dietitians, nurse navigator Guest speakers include physician, navigation team members, community leaders In place for 4 years Adjustments made to reflect patient need

103. Prescription for Living: Beyond Breast Cancer Assess: Focus group Surveyed providers and patients Secured support for referral from providers Engaged pharmaceutical reps for funding Applied for grants Nursing diagnosis: Asked providers what barriers patients encountered most often after treatment Distilled that list to teachable vignettes, linking them with current research findings and recommendations

104. Prescription for Living: Beyond Breast Cancer Plan: Reviewed adult learning preferences Organized topics Requested speaker commitment Outlined course Compiled supporting information Developed Power Points Considered learning experience to include many modalities Purchased tools & books Calorie King ACS Healthy Eating Contacted related organizations for patient handouts Calcium Supplements Vaginal lubricant Lymphedema ID wristbands

105. Prescription for Living: Beyond Breast Cancer Implementation: Offered first class in September 2007 Two times: afternoon and evening Spring and fall classes 90-minutes class Provided instruction, demonstration, homework, and food tasting Secured funding Evaluation: Pre- and post-class evaluation for participants Evaluations per funding agreement Feedback from providers Feedback from speakers Reassessment and program change

106. Orlando’s Nursing Process Theory Is a Valuable Tool in Navigation Programs Effective navigation is the nursing process Know it and use it The answer to navigation process development and success has been with us all along

107. For questions or comments: sbowman2@wellspan.org 717-741-8455 With thanks and appreciation to: David Bowman - presentation development Tom Bowman - support and editing York Cancer Center for supervision and encouragement

108. Breast Cancer NavigationChallenges Facing the Younger Breast Cancer Patient Leesa Mattingly, RN, OCN Breast Health Navigator Norton Cancer Institute

109. Norton Healthcare and The Norton Cancer Institute Norton Healthcare is the largest provider of healthcare in Louisville, Kentucky, and the surrounding region with 5 acute care hospitals Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research, increase access to care, and increase quality of care

110. Norton Cancer InstituteResource Centers The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer These centers are staffed Monday-Friday, 8:00 AM-4:30 PM, with Oncology Certified Nurses Many of the services are offered at no cost to anyone in the community with a cancer diagnosis, caregiver, or family member

112. Education

113. Massage therapy

114. Art therapy

115. Music therapy

116. Behavioral oncology

117. Nutritional counseling

118. Transportation assistance

119. Free wigs/turbans

120. Look Good…Feel Better (LGFB) Program

122. What Is a Nurse Navigator? An Oncology Certified Nurse who oversees the educational, emotional, and social needs of the patients and family members from point of suspicious finding through diagnosis, treatment, and into survivorship Nurse navigators are specially trained to offer the latest information on prevention, early detection of cancer treatment options, and recovery concerns

123. Norton Cancer Institute Breast Health Services The multidisciplinary team includes: Board Certified Breast Surgeons Board Certified Reconstructive Surgeons Medical and Radiation Oncologists Genetic Counselors Lymphedema Specialists Oncology Certified Nurses Nurse Navigators Counselors Behavioral Oncologists Licensed Dietitians Social Workers Complementary Therapists

124. Referrals Physician referrals Inpatient and outpatient Surgery schedule Community outreach/screenings Reputation in the community

125. Facts About Breast Cancer Young women under age 45 can and do develop breast cancer. In the United States, about 10% of all breast cancer occurs in women under age 45 24,000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer) More than 3000 will die Breast cancer is the leading cause of cancer deaths in women under age 40 (www.komenadvocacy.org)

126. History of the Young Survivors Support Group In September 2006, a young women (M.S.) in our community was diagnosed with breast cancer at age 31 M.S. shared her story with the news media and her journey was also followed by our local paper M.S. focused on “wanting to help other young women like myself”

127. What Makes This Support Group Different? Women aged 40 and younger when first diagnosed with breast cancer Activities/support Lunch/dinner Social networking Survivors willing to mentor a newly diagnosed woman, caregiver, or spouse Family events Young Survivors Coalition Annual Conference

128. How Is It Funded? Auction Local football game Donations

129. Case Study 1: J.H. J.H. was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE) Biopsy showed a G3 IDC of the right breast. ER-/PR+ Her-2/neu- She and her mother arrived from the surgeon’s office for our first meeting together

130. Assessment of Barriers/J.H. Education Finances Physician appointments Chemo Fertility Body image Autonomy Anxiety, fear, stress

131. Education Type of cancer, grade, prognostics Mastectomy Prophylactic mastectomy Reconstruction Lumpectomy Radiation Sentinel node biopsy J.H. opted for a right mastectomy with left prophylactic mastectomy and immediate reconstruction with tissue expanders (TEs). Right sentinel node biopsy removed 6 nodes, all negative

133. Dose-dense doxorubicin and cyclophosphamide times 4 cycles followed by docetaxel times 4 cycles

134. No hormone suppression

135. Reconstructive Surgeon

136. Immediate reconstruction with TEs

137. Fertility Specialist

138. No egg harvesting

139. Genetics

140. Mother negative for breast cancer, maternal grandmother with breast cancer at age 65

141. Father was adopted

143. Body Image Bilateral mastectomy Chemo ̵̵ Hair loss/wig, LGFB program ̵̵ Weight gain/dietitian, exercise and yoga

144. Autonomy J.H. is an adult of legal age living with her parents HIPAA Building trust

145. Emotional Issues Anxiety, fear, stress Young Survivors Support Group Behavioral oncology Massage therapy Friends/family

147. Biopsy showed IDC of the right breast. ER+/PR-Her-2/neu-

148. Married with no children. Works as a medical assistant in a physician’s office

150. Education Type of cancer, grade, prognostics Mastectomy Prophylactic mastectomy Reconstruction Lumpectomy Radiation Sentinel node biopsy A.L. opted for right mastectomy with prophylactic left mastectomy and immediate reconstruction with TEs. Sentinel node biopsy removed 10 nodes, all negative

151. MD Appointments Medical Oncologist - Chemotherapy Cyclophosphamide and docetaxel times 6 cycles Oral antihormone agent Reconstructive Surgeon Immediate reconstruction with TEs Fertility Specialist Egg harvesting Genetics Negative for BRCA I and II mutation

152. Finances A.L. had to continue working during treatment. Fertility procedure was not covered by insurance Med Assist Co-Pay Relief ACS Fertile Hope Transportation Assistance

153. Body Image Bilateral mastectomy Chemo Hair loss/wig, LGFB program Weight gain/exercise and yoga Hormone suppression Decreased libido/behavioral oncology

154. Emotional Concerns Anxiety, fear, guilt, stress, anger Young Survivors Support Group Behavioral oncology Massage therapy Spouse Family/friends Church Delay in pregnancy

155. J.H. and A.L. Today J.H. has completed treatment phase. She works part- time and attends college A.L. has finished her chemotherapy treatment and breast reconstruction. She remains on an oral antihormonal medication. She is working full-time as a medical assistant in a physician’s office. A.L. is anxious to end treatment totally, so that she can pursue her lifelong dream of becoming a mother

156. Quotes from a Young Survivor “I joined the Young Survivors group and looked forward to the fellowship. I had other women who made me feel like what I was going through was normal, that I wasn’t alone.” “As a young woman, I feel the dynamics of cancer affect us differently than that of the middle-aged population. Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young age.”

157. “EGGS FOR EGGS” Alicia, an employee of Internal Medicine and Pediatrics, has just been diagnosed with breast cancer. Within 3 weeks, she will be undergoing a double mastectomy. As if that wasn’t bad enough, Alicia is 27 years old. The chemotherapy will more than likely make it impossible For her to ever be a Mommy. She was hoping to go through an Egg Harvesting procedure Before her surgery, but it will cost $12,000. These ribbons were created out of love, in hopes that we could help offset the costs. Show your support, and take a ribbon out of one of these special eggs. We ask that you leave behind a pledge of support. Whether it’s $1… or $100… We thank you for helping us help Alicia To fulfill what she ultimately wants… To Be a Mom…

159. References Facts about breast cancer, retrieved August 8, 2011, from www.komenadvocacy.org Norton Healthcare, retrieved August 8, 2011, from www.nortonhealthcare.org