Breast Health Quality Consortium. All Member Meeting Survivorship. March 30, 2016 BHQC. Breast Health Quality Consortium

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1 Breast Health Quality Consortium All Member Meeting Survivorship March 30, 2016 BHQC Breast Health Quality Consortium

2 Breast Health Quality Consortium Goal: Reduce disparities in breast cancer mortality and quality of care for low-income and uninsured women in the National Capital Area. Methods: Engage all breast health providers across the continuum of care in process improvement and systems change activities. Based on the successful Chicago model: PROCESS IMPROVEMENT TECHNIQUES to promote highest quality of care within individual practices & facilities. COMPARATIVE DATA ANALYSIS to elevate the quality of care delivery across all providers. SYSTEMS AND POLICY CHANGE to eradicate treatment and mortality differences for low-income women. BHQC Breast Health Quality Consortium

3 Meeting Agenda Introductions Quality Care for Post-Treatment Cancer Survivors Elizabeth Hatcher, MSN, APRN, FNP-BC; GW Medical Faculty Associates Division Barriers & Challenges in Cancer Care for Latinas in the National Capital Area Astrid Jiminez, Executive Director, Nueva Vida Importance of Care Plans and Advocacy Dan Weber, Director of Communications, National Coalition for Cancer Survivorship BHQC Breast Health Quality Consortium

4 Quality Care for Post-Treatment Cancer Survivors March 30, 2016 Elizabeth Hatcher, MSN APRN, FNP-BC

5 Objectives Describe the need to focus on post-treatment survivorship Identify the common issues and unmet needs that cancer survivors experience after treatment ends Describe recommendations for health promotion for survivors Identify basic elements of survivorship care and survivorship care plans Discuss survivorship tools and resources

6 Who is a Cancer Survivor? Several definitions 5 years after diagnosis From the moment of diagnosis through the balance of life Including family and caregivers After completion of treatment Survivors don t always use the word survivor For the purpose of this discussion, a cancer survivor is someone who has completed active treatment

7 Current Focus on Survivorship Rapidly growing older population Rapidly growing population of survivors (14 million!) Greater emphasis on patient-centered care Increasing expectations by survivors for good quality of life Strong advocacy movement National reports focused on survivorship Association of Community Cancer Centers guidelines New Commission on Cancer accreditation standards CDC survivorship priority

8 Accreditation Standards Commission on Cancer: Standard 3.3 SCP for survivors: Stage I, II, or III cancers treated for curative intent, completed active therapy, initial occurrence Approved and delivered by appropriate provider within one year of cancer diagnosis, within 6 months of completion of adjuvant therapy (other than long-term hormonal) Must be discussed with patient End of 2016: Provide SCPs to 25% of eligible patients

9 Accreditation Standards National Accreditation Program for Breast Centers (NAPBC) Requiring delivery to 100% in 2016 Delivered within 6 months from end of treatment, 1 year from diagnosis 18 months for those receiving Herceptin Not required for those diagnosed with Stage IV, consider providing summary of treatment and possible effects to patient and primary care provider (PCP)

10 Survivorship Needs Social Spiritual Psychological Financial Physical/medical Survivorship Informational

11 Survivorship Terms Long-term effects Side effects or complications of treatment Begin during treatment and continue beyond treatment Late effects Unrecognized complications that are absent or subclinical at the end of treatment Occur months and years after treatment

12 Top 5 Survivor Concerns Fearful Illness Will Return Fatigue/Loss of Strength Concern about Relapsing Fears about the Future Sleep Difficulties 1-YR 3-YRS 6-YRS 11-YRS Source: American Cancer Society Studies of Cancer Survivors

13 Potential Physical impacts

14 Survivor Needs: 2010 LIVESTRONG Survey for Post- Treatment Cancer Survivors 60% 50% 40% 30% 20% 10% 0% 31% 44% 30% 11% 15% 22% 19% 13% 15% 9% Energy Concentration Sexual Functioning Neuropathy Pain Did NOT receive care Received care

15 Physical Late and Long-Term Effects of Breast Cancer Anthracycline induced cardiotoxicity (chronic progressive dilated cardiomyopathy) Endocrine therapy related cardiovascular disease, Hypertension, hypercholesterolemia, and possibly ischemic heart disease Fatigue (disproportionate sense of physical, emotional, or cognitive exhaustion in relation to one s activity) Lymphedema Musculoskeletal symptoms, accelerated bone loss, and fractures Joint pain Chronic pain, including neuropathy Premature menopause, amenorrhea, and infertility Recurrence and new breast cancers Skin changes (due to radiation) Other cancers Sexual dysfunction Source:Kenyon M, Mayer DK, Owens AK. (2014), Late and Long-Term Effects of Breast Cancer Treatment and Surveillance Management for the General Practitioner. Journal of Obstetric, Gynecologic, & Neonatal Nursing,43: doi: /

16 Long-Term and Late Effects: Chemo Brain Refers to cognitive changes related to cancer treatment Problems with word finding, multi-tasking, calculations, learning new material Many see improved functioning in 6-12 months; others will plateau

17 Long-Term and Late Effects: Chemo Brain Coping strategies Reduce distractions at work Utilize smart phone, GPS technology Treat anxiety, depression, other issues Take breaks from tasks Organize schedule to reduce demands Avoid multi-tasking Reasonable accommodations from employer

18 Long-Term and Late Effects: Fatigue Duration may vary Depression, early menopause, pain, sleep disturbances, immune system changes, anemia, cardiovascular disease can be factors. Cause(s) are not fully understood Coping strategies Increasing physical activity reduces fatigue. Schedule activities to maximize energy levels.

19 Potential psychosocial impacts

20 Top Unmet Psychosocial Needs 35% 30% 25% 20% 15% 30% 26% 26% 26% 19% 20% 22% 17% 21% 19% Baseline Follow Up (6 mo) 10% 5% 0% Fears of cancer spreading Concerns about worries of those close Uncertainty about future Worry that treatment results are out of control Lack of energy/tiredness Source: Armes J et al., J Clin Onc, 2009.

21 80% Survivor Needs: 2010 LIVESTRONG Survey for Post- Treatment Cancer Survivors 70% 60% 50% 53% 39% 40% 46% 30% 37% Did NOT receive care 20% 31% Received care 10% 22% 25% 0% 17% 12% 9%

22 Breast Cancer Psychosocial Effects Anxiety Cognitive dysfunction Decreased satisfaction with life Depression Fear of recurrence Poor body image Post traumatic stress disorder Sexual dysfunction Source: Kenyon M, Mayer DK, Owens AK. (2014), Late and Long-Term Effects of Breast Cancer Treatment and Surveillance Management for the General Practitioner. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 43: doi: /

23 Long-Term and Late Effects: Fear of Recurrence Risk is different for each person, depending on type of cancer, treatment, how long since treatment Fear of recurrence is not proportional to risk Validating concerns is important Common feelings: anxious, sad, guilty, emotionally exhausted, fatigued, fearful Important to identify patients who may be in distress and in need of counseling services Know available resources and referral protocol

24 Increased Risk for Depression Breast cancer patients 3x more likely to use antidepressants during first year after diagnosis 20% of breast cancer survivors experience clinical depression during first 5 years after diagnosis Screening for depression must be made part of clinical treatment of breast cancer Source: Suppli, N. P., Johansen, C., Christensen, J., Kessing, L. V., Kroman, N., & Dalton, S. O. (2014). Increased Risk for Depression After Breast Cancer: A Nationwide Population-Based Cohort Study of Associated Factors in Denmark, Journal of Clinical Oncology, JCO-2013.

25 Potential Practical impacts

26 Survivor Needs: 2010 LIVESTRONG Survey for Post- Treatment Cancer Survivors 80% 70% 60% 50% 40% 30% 20% 10% 0% 36% 29% 37% 23% 15% 11% 10% 6% School issues Employment issues Debt Insurance Did NOT receive care Received care

27 Financial Challenges Survivors may be dealing with outstanding medical costs, reduced income and other financial burdens. Assistance Organizations/Resources Patient Advocate Foundation Job Accommodation Network State/ Local Resources Energy assistance programs Vocational rehabilitation services HUD-approved counseling services Office on Aging

28 Promoting health for survivors

29 Eight Ways to Stay Healthy After Cancer Don t Smoke Avoid secondhand smoke Exercise regularly Avoid weight gain Eat a healthy diet Drink alcohol in moderation Stay connected with friends, family, and other survivors Get screening tests and go to checkups Wolin K, Dart H, Colditz G. Cancer Causes Control; 2013.

30 Case Study A 40 yo woman comes to you as a new patient. She had a 4 cm breast cancer, EP/PR negative, with 1/22 nodes positive 8 years ago. She was treated with a lumpectomy, node dissection, RT & chemotherapy (AC). What are some possible late and long-term considerations? Miller, K. (2013). Caring for Cancer Survivors in the Primary Care Setting Cure is not enough. Cancer Survivorship E-Learning Series for Primary Care Providers.

31 Case Study Physical Psychosocial Practical Surgery Cosmesis Functional disability Pain Scarring/adhesions Lymphedema Radiation Second malignancies CVD, myopathy Pneumonitis/fibrosis Chemotherapy Chemo Brain Cardiomyopathy Early menopause Sexual dysfunction Fear of recurrence Depression Anxiety Changes in relationships Sleep disturbances Body image changes Medical debt Job loss

32 Elements of Survivorship Care

33 Current Survivorship Care Limited guidelines No standard model Not yet part of standard care practices Need more provider and patient education

34 Basic Elements of Survivorship Care Prevention of cancer and late effects Surveillance for recurrence screening for new cancers Identification of interventions for consequences of cancer and its treatment Coordination between oncology specialists and primary care providers Source: Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Transition

35 Survivorship Care Plans Key survivorship component Roadmap for post-treatment care Tool for care coordination and communication Includes Treatment Summary + Follow-up Care Plan

36 Survivorship Care Plan Requirements Treatment summary American Society of Clinical Oncology (ASCO) data elements Follow up plan Surveillance, screening recommendations Possible late and long-term effects including sexual & psychological Referral for services (rehabilitation, financial counseling, smoking cessation, etc.) Recommendations for lifestyle changes and health maintenance Provide SCP to survivor, treatment team, PCP

37 Resources for Providers & Survivors

38 Survivorship Guidelines National Comprehensive Cancer Network By cancer type By topic: anxiety and depression, cognitive function, exercise, fatigue, immunizations and infections, pain, sexual function (female/male), sleep disorders American Society of Clinical Oncology By cancer type (limited) By topic: neuropathy, fatigue, anxiety and depression, fertility preservation American Cancer Society Survivorship Care Guidelines for Primary Care Providers By cancer type: prostate, breast, colorectal

39 Resources for Survivorship Care Planning Templates ASCO Journey Forward Electronic Medical Record Software Guidelines National Comprehensive Cancer Network (NCCN) American Cancer Society (ACS)

40 Cancer Survivorship E-Learning Series

41 E-Learning Series Overview Goals of Modules: 1. Increase PCP awareness of ongoing needs of cancer survivors. 2. Increase PCP knowledge of how to care for cancer survivors. 3. Increase PCP ability to provide followup care for cancer survivors. Features: 1. 9 online educational modules 2. CE credits available

42 Resources for Survivors NCI educational resources Local institutional resources ASCO weight management for survivors AICR and ACS nutrition and physical activity information

43 Conclusion The challenges faced by cancer survivors do not end when treatment ends Post-treatment survivorship care is essential to address needs, coordinate care and improve quality of life

44 Survivorship Resources GW Cancer Institute Executive Training on Navigation and Survivorship (free online training): Cancer Survivorship E-Learning Series for Primary Care Providers National Cancer Institute Office of Cancer Survivorship Facing Forward: Life After Cancer Treatment (online booklet) Cancer.Net survivorship portal (American Society of Clinical Oncology)

45 Resources CoC Standard: NAPBC Standard: nual.ashx#page=59 Comparison of CoC and NAPBC standards: ASCO Template: Journey Forward: NCCN Guidelines: ACS Guidelines: sourcecenter/toolsforhealthcareprofessionals/index

46 Thanks!

47 Presentation from Nueva Vida BHQC Breast Health Quality Consortium

48 Presentation from NCCS BHQC Breast Health Quality Consortium

49 Breast Health Quality Consortium Upcoming Events: Next All-Member Breast Health Quality Consortium Meeting will be held in early June Tentative focus will be on using hospital data to target disparities Hospital registrars & cancer care team members urged to attend! To join regional patient navigation meetings, contact Mary Joseph: Trainings for mammography technologists available! Please contact Nneka Madu for details: Let us know what training, networking, and/or discussion you would like to have to improve breast cancer care! BHQC Breast Health Quality Consortium

50 Please complete the brief evaluation! THANK YOU! Mary Joseph Nneka Madu Rachel Parks Ben Turner BHQC Breast Health Quality Consortium