Oklahoma Cancer Survivorship Education Program Made possible by the Lance Armstrong Foundation

1. Oklahoma Cancer Survivorship Education Program Made possible by the Lance Armstrong Foundation

2. Learning Objectives • Identify the role of the primary care team in caring for the cancer survivor. • Recognize the communication issues between the health care team and the cancer survivor. • Recognize the barriers to communication based on literacy levels. • Response to the 2005 IOM Report. • Journey Forward

3. Goals and Objectives The OKAHEC Lance Armstrong Survivorship project will address the cancer survivorship-related objectives of the National Action Plan for Cancer Survivorship and the implementation plan of the Oklahoma Comprehensive Cancer Plan by: • Educating survivors of cancer how to “live strong” and navigate their health care. • Encouraging health care professionals to improve delivery of services and increase awareness of issues faced by cancer survivors. • Establishing a sustainable network of partners to continue educating rural Oklahomans about cancer survivorship issues beyond the period of the grant project.

4. Oklahoma – A Rural State • The Oklahoma Comprehensive Cancer Network (OCCN) reports that the cancer incidence rate for Oklahoma has exceed the U.S. rate. • Estimates are that 18,600 new cases are now diagnosed per year in Oklahoma • It is estimated that an additional 65,000 diagnosed Oklahomans will join the survivor ranks in the next five years • 39,000 of these new cancer survivors living outside of the metropolitan areas.

5. Cancer Incidence Oklahoma vs U.S. 1. SEER Cancer Statistics Review 1975-2007 htttp://seer.cancer.gov/csr/1975_2007/browse_csr.php?section=2&page=sect_02_table.01.html 2. Oklahoma State Department of Health http://www.ok.gov/health/pub/wrapper/ok2share.html

6. Cancer Mortality Oklahoma vs U.S. 1. SEER Cancer Statistics Review 1975-2007 http://seer.cancer.gov/csr/1975_2007/browse_csr.php?section=2&page=sect_02_table.01.html 2. Oklahoma State Department of Health http://www.ok.gov/health/pub/wrapper/ok2share.html

7. Survivorship

8. Who is a Survivor • The definition of cancer survivor used here originated with the founding charter of the National Coalition for Cancer Survivorship (NCCS) in 1986: • “From the moment of diagnosis and for the balance of life, an individual diagnosed with cancer is a survivor.”3 • When someone has cancer, family members, friends, and caregivers are also affected and are sometimes considered survivors as well. 4, 5

9. Prevalence of Survival Rates 6. SEER Cancer Statistics Review 1975-2007 http://surveillance.cancer.gov/statistics/types/survival.html

10. Prevalence of Survival Rates Black White 6. SEER Cancer Statistics Review 1975-2007 http://surveillance.cancer.gov/statistics/types/survival.html

11. Cancer Survival Cancer survival is the proportion of patients alive at some point subsequent to the diagnosis of their cancer, or from some point post-diagnosis (conditional survival). It is represented as the probability of a group of patients "surviving" a specified amount of time (e.g. 3 years, 5 years, 20 years). 6 6. SEER Cancer Statistics Review 1975-2007 http://surveillance.cancer.gov/statistics/types/survival.html

12. Issues of Survivorship 7 • Physical • treatment and sequelae of treatment • disease process • body image • reproduction • sexuality • disability • death • pain • sleep disturbance • general health vulnerability • nutrition.

13. Issues of Survivorship • Psychological • fear of recurrence • adjustment to physical limitations • concept of self • altered interpersonal relationships and roles • social support • uncertainty • Damocles syndrome – happy to be alive but fearful of what’s hanging over your head.

14. Issues of Survivorship • Spiritual – • hope (ful/less) • appreciation for life • creativity • abandonment by / closeness to God • questions and doubts • purpose • life after death • Socioeconomic – • employment • insurance discrimination • costs

15. Emotions 7 Sadness—last more than two weeks and keeps you from doing what you need to do, you may be depressed. Anger— may come from fear, panic, or stress. Grief—feeling a loss of what you value most (your loved one’s health), loss of day-to-day life before cancer. Guilt—may think you are not helping enough. Guilty because you are healthy. Loneliness—No one understands your problems, spending less time with others.

16. ASK Me 3™ What is my main problem? What do I need to do? What are my options? Why is it important for me to do this? http://www.npsf.org/askme3/

17. Understanding Let your doctor, nurse, or pharmacist know if you still don't understand what you need to do. You might say: "This is new to me. Will you please explain that to me one more time?" “I am not sure what you mean. Can you explain it again?” Can you write it down for me? “Are you saying that I need to_______?”

18. Why am I taking this medication? What does this medication do for me? How much do I take and how often? How long should I take the medication? What foods, beverages, and activities should I avoid? Is there a generic version that works as good and is less expensive? How should I store this drug? MedicationsAsk questions before you leave the pharmacy

19. Tips for Clear Health Communication I will ask the 3 questions. I will bring a friend or family member to help me at my doctor visit. I will make a list of my health concerns to tell my doctor or nurse. I will bring a list of all my medicines when I visit my doctor or nurse. I will ask my pharmacist for help when I have questions about my medicines.

20. Health Professional Education

21. Essential Components of Survivorship Care for Physicians • Prevention of recurrent and new cancers, and of other late effects of the disease. • Surveillance for cancer spread, recurrence, second cancers, and assessment of medical and psychosocial late effects • Intervention for consequences of cancer and its treatment, medical and psychosocial. • Coordination between specialists, primary care providers and the patient to ensure that all the survivor’s health needs are recognized and met.

22. Role of Primary Care physician in Cancer Treatment • Monitors the patient’s overall health and well-being throughout the acute, follow-up treatment and beyond. • Knows patient well enough to detect patient suffering from new symptoms or symptoms out of the ordinary. • Relied on to explain in a comprehensible way what is going on with disease and treatment course and plan.

23. Role of Primary Care physician in Cancer Treatment • Has long standing relationship with patient and family. Typically the one who initially suspects cancer and makes referral. • Counsel is often sought before acute treatment is begun to ensure they are in agreement with recommendations. • While in treatment, patients and families often visit primary care physician to discuss overall state of health and emotional state. • Follows patient for co-existing disease and for new, acute episodes of illness which may affect management and efficacy of cancer treatment.

24. Table of Late Effects TreatmentLong-term side effectsLate, or delayed, side effects Chemotherapy Fatigue Cataracts Menopausal symptoms Infertility Neuropathy Liver problems Chemobrain Osteoporosis Heart failure Lung disease Kidney failure Reduced lung capacity Infertility Second primary cancers Liver problems Radiation therapy Fatigue Cataracts Skin sensitivity Cavities and tooth decay Heart problems Hypothyroidism Infertility Lung disease Intestinal problems Memory problems Second primary cancers Surgery Scars Lymphedema Chronic pain Source: Mayo Clinic: Original Article: http://www.mayoclinic.com/health/cancer-survivor/CA00073, 10.02.07.

25. Communication Barriers:Between Patient and PhysicianBetween PCP and SpecialistAmong Survivors, PCP, Specialist, and Family

26. Communication Health Literacy – the degree to which individuals have the capacity to obtain, process, and understand basic health information and services. Improvement is needed to make appropriate health decisions and is critical to achieving the objectives set forth in Healthy People 2020 and, more broadly, key to the success of our national health agenda. 12 12. National Action Plan to Improve Health Literacy, U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion http://www.health.gov/communication/HLActionPlan/

27. Communication • The plan is based on the principles that: • Everyone has the right to health information that helps them make informed decisions. (2) Health services should be delivered in ways that are understandable and beneficial to health, longevity, and quality of life. • The vision informing this plan is of a society that: • Provides everyone with access to accurate and actionable health information. • Delivers person-centered health information and services. (3) Supports lifelong learning and skills to promote good health.

28. Communication • Two decades of research indicate that today's health information is presented in a way that isn't usable by most Americans. • Nearly 9 out of 10 adults have difficulty using the everyday health information that is routinely available in our health care facilities, retail outlets, media, and communities.1, 2, 3 • Without clear information and an understanding of prevention and self-management of conditions, people are more likely to skip necessary medical tests. • They also end up in the emergency room more often, and they have a hard time managing chronic diseases, such as diabetes or high blood pressure.1 • 1. Nielsen-Bohlman, L., Panzer, A. M., & Kindig, D. A. (Eds.). (2004). Health literacy: A prescription to end confusion. Washington, DC: National Academies Press. • Kutner, M., Greenberg, E., Jin, Y., & Paulsen, C. (2006). The health literacy of America's adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006-483). Washington, DC: U.S. Department of Education, National Center for Education Statistics. • Rudd, R. E., Anderson, J. E., Oppenheimer, S., & Nath, C. (2007). Health literacy: An update of public health and medical literature. In J. P. Comings, B. Garner, & C. Smith. (Eds.), Review of adult learning and literacy (vol. 7) (pp 175–204). Mahwah, NJ: Lawrence Erlbaum Associates.

29. Communication • Limited health literacy affects people of all ages, races, incomes, and education levels • However, the impact of limited health literacy disproportionately affects lower socioeconomic and minority groups. • It affects people's ability to search for and use health information, adopt healthy behaviors, and act on important public health alerts. • Limited health literacy is also associated with worse health outcomes and higher costs.5 5. Berkman, N. D., DeWalt, D. A., Pignone, M. P., Sheridan, S. L., Lohr, K. N., Lux, L., et al. (2004). Literacy and health outcomes (AHRQ Publication No. 04-E007-2). Rockville, MD: Agency for Healthcare Research and Quality.

30. Communication Won’t Communicate • Worry of stimulating feelings of fear or depression in the other person. • Belief that ‘not talking’ protects family members from the harsh realities and consequences of the illness. • Fear of saying or doing the wrong thing.

31. Communication • Survivors suppress or bury feelings when family members avoid listening by turning to safer topics of conversation. • Either party may feel the need to always be positive and optimistic. • Discussion of unpleasant topics upset significant others and survivors ---don’t want to raise anxiety levels.

32. Communication • Many factors in the current health care system contribute to limited health literacy, including: • Lack of coordination among health care providers • Confusing forms and instructions • Limited use of multimedia to convey information • Insufficient time and incentives for patient education • Differences in language and cultural preferences and expectations between doctors and patients • Overuse of medical and technical terms to explain vital information

33. Doctor to Patient • Explain things clearly and in plain language. Use “family room” language. • Slow down. Listen. • Focus on key messages and repeat them. • Use “teach back” to check understanding. Don’t ask “Do you understand?” Ask, “What do you understand?” • Use patient-friendly educational materials, pictures when possible.

34. Doctor to Patient • Use the “Ask Me 3” system. Answer for the patient: • This is your main problem right now • This is what you need to do and here are your options • This is why it is important to do this. • Ask the patient, “How do you want me to include your family in our visits?” Give them the opportunity to speak privately with you.

35. Doctor to Patient Empathy Research shows that a few kind words from the physician can go a long way toward helping people with cancer to……7 • Understand their treatment • Stick with it • Cope better • Maybe even fare better medically

36. Cancer Survivorship Planning

37. Institute of Medicine Recommendation In 2005 the Institute of Medicine (IOM) released From Cancer Patient to Cancer Survivor: Lost in Transition.9 Of the report’s 10 recommendations, the one that has gotten the most attention from professional organizations and grassroots advocacy and survivor groups is: * the call for the creation of a survivorship care plan for any patient who completes initial treatment. 9

38. . Institute of Medicine Report 2005 9 How prepared is the primary care physician to care for the post-treatment cancer patient (self-report)?

39. Institute of Medicine Report 2005 How often do primary care physicians receive end-of-treatment summaries from oncologists for patients they referred or currently follow?

40. Institute of Medicine Report 2005 Does receiving the end-of-treatment summary actually help the primary care physician care for their patients better (primary care provider self-report)?

41. Survivorship Care Planning Journey Forward is a new program designed for doctors and their patients who have recently completed active treatment for cancer. This program was created by a unique collaboration of organizations with the common goal of improving survivorship care. Journey Forward promotes the use of Survivorship Care Plans. These plans, completed by the Survivor’s oncology team, give clear steps for care after active treatment. A typical plan begins with a simple, yet complete, treatment summary and offers guidelines for monitoring future care. 11

42. Survivorship Care Planning • We encourage oncologists and primary care physicians to implement Survivorship Care into their practices so cancer Survivors can move forward with the care and support they need. 13 • Journey Forward was created by a collaboration among: • National Coalition for Cancer Survivorship • UCLA Cancer Survivorship Center • WellPoint, Inc. • Genentech • Lance Armstrong Foundation

43. Survivorship Care Planning About Survivorship Care Planning A Survivorship Care Plan is a coordinated post-treatment plan between the Survivor’s oncology team, a primary care physician and other health care professionals. The oncologist creates a summary of the Survivor’s treatment and includes direction for future care.

44. Survivorship Care Planning A typical Survivorship Care Plan includes: 1. patient diagnosis and treatment summary 2. best schedule for follow-up tests 3. information on late- and long-term effects of cancer treatment 4. list of symptoms to look for 5. list of support resources

45. Survivorship Care Planning This comprehensive medical summary, given to the Survivor and their primary care physician, helps support better survivorship care. The plan includes important information for monitoring possible secondary cancers and any late- or long-term effects of the Survivor’s cancer treatment. A Survivorship Care Plan also relieves a Survivor from having to recall all the details of treatment and ensures all future health care providers are working as a team for the Survivor’s care. 11

46. Survivorship Care Planning

47. Partners • Oklahoma Comprehensive Cancer Network, Oklahoma State Department of Health • Oklahoma Cancer Survivors • Cherokee Nation • Leukemia and Lymphoma Society • INTEGRIS Health Systems • NCI Cancer Information Services • American Cancer Society • OU Cancer Center • Oklahoma Society of Clinical Oncology • OK Area Health Education Centers (OKAHEC) • OSU Center for of Rural Health

48. References SEER Cancer Statistics Review 1975-2007 htttp://seer.cancer.gov/csr/1975_2007/browse_csr.php?section=2&page=sect_02_table.01.html Oklahoma State Department of Health http://www.ok.gov/health/pub/wrapper/ok2share.html Oklahoma Cancer State Plan 2006 – 2010 Cut Out Cancer In Oklahoma. Office of Cancer Survivorship. About cancer survivorship research; survivorship definitions. National Cancer Institute, U.S. National Institutes of Health. 2006. http://dccps.nci.hih.gov/ocs/definitions.html. Rowland JH, et al. Cancer survivorship: a new challenge in delivering quality cancer care. J ClinOncol 2006;24(32);5101-4 SEER Cancer Statistics Review 1975-2007 http://surveillance.cancer.gov/statistics/types/survival.html National Coalition for Cancer Survivorship. Pioneering survivorship: 20 years of advocating for quality cancer care. 2005 Annual Report.Silver Spring, Md: The Coalition; 2006. ASK ME 3 ™ http://www.npsf.org/askme3

49. References Maria Hewitt, Sheldon Greenfield, & Ellen Stovall (Eds.). ( 2006). From Cancer patient to Cancer Survivor, Lost in Transition. Washington, D.C. Institute of medicine and national Research Council of the National Academies. IOM, Implementing Cancer Survivorship Care Planning, Washington D.C.: National Academies Press, 2007 National Action Plan to Improve Health Literacy, U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion http://www.health.gov/communication/HLActionPlan/http://www.health.gov/communication/literacy/olderadults/default.htm http://www.journeyforward.org/

50. Oklahoma Cancer Survivorship Education Program Made possible by the Lance Armstrong Foundation