Prostate Cancer Control Plan for Michigan Updated 2005

1. Prostate Cancer Control Plan for Michigan (Updated 2005) MCC Advisory Committee on Prostate Cancer February 15, 2006

2. 1998 Prostate Cancer Priority By 2006, prostate cancer patients will have their knowledge and understanding of prostate cancer, treatment options, side effects, and quality-of-life issues measured by patient surveys, with findings used to develop, disseminate, and evaluate new patient education materials.

3. 2004 ACPC Charge from MCC Review the 1998 MCC strategic plan for prostate cancer control. Understand the progress made to date to achieve the current priority. Review the changes in science and/or clinical issues that have occurred since the last Prostate Cancer Control Plan was written. Develop a revised/updated Prostate Cancer Control plan for MI with recommendations for strategies to focus on over the several years.

4. New Plan Developed With Special Thanks To… 3 Work Groups Primary and Secondary Prevention: Dr. Willie Underwood, MD – Chair Treatment: Dr. Angela Fagerlin, Ph.D. - Chair Survivorship: Dr. Laurel Northouse, Ph.D. –Chair ACPC Approval September, 2005

5. Progress to date: 1998 Priority Survey of newly-diagnosed men ? many did not know or fully understand their treatment options, including the side effects of treatment. Critical review of existing patient education materials ? accurate but not complete enough to support informed decision making.

6. Progress to Date Development by PCAC of plain language patient education materials (PEMs). Booklet (English, Spanish, Arabic) Audio tape (English) Website (which includes PDF and online survey) www.prostatecancerdecision.org

7. Progress to Date Focus testing of PEMs ? plain language made medical information clear, and it was found to be useful in making informed decisions. “I got more info from your site than from my MD & urologist combined.” (online survey respondent) Remaining Challenge: Systematic Dissemination to men at time of decision-making.

8. New Plan: Primary and Secondary Prevention Priority: Increase, by 2010, awareness of prostate cancer risk factors as well as the benefits and risks of prostate cancer screening among primary care physicians, high-risk men, and the general public.

9. Primary and Secondary Prevention: Current Status PSA a good screening test with DRE. Still no evidence that screening decreases mortality. African Americans still at high risk of disease, mortality; less likely to be aware or obtain testing. Counseling about PSA important, especially for high risk men (AA, Family HX).

10. Primary and Secondary Prevention: What’s Needed Men and primary care providers need to be aware of screening issues. High risk men should be well-informed. Providers must understand risk factors and identify and counsel high risk men.

11. Primary and Secondary Prevention: Progress Markers Repeat of 1995 Prostate Cancer KAP physician survey (underway early 2006). Repeat of 2001-02 SCBRFS to determine changes in counseling from providers about prostate cancer testing risks and benefits, and receipt of a PSA test among men (underway early 2006).

12. Primary and Secondary Prevention: Objectives Increase by 2010 awareness of prostate cancer risk factors as well as the benefits and risks of prostate cancer screening 30% among primary care physicians (Baseline:  2006 KAP survey of physicians), and 30% among high risk men and the general public (Baseline:  2006 SCBRFS). By 2010, increase from 70% to 80%, the awareness of prostate cancer risk factors among African American men. (Baseline 2006 SCBRFSS)

13. 3. By 2010, there will be a 40% increase in adherence to the 2005 Michigan Cancer Consortium prostate cancer early detection recommendations among primary care physicians, with particular emphasis on populations of higher than average prostate cancer risk. Primary and Secondary Prevention: Objectives

14. Primary/Secondary Prevention Strategies: Knowledge Disseminate 2006 risk assessment and early detection recommendations among health care providers. Encourage MAHP and MQIC to conduct risk assessments while counseling men about the efficacy of prostate cancer testing. Widely disseminate existing CDC prostate health booklets. Develop/conduct educational activities among African American men.

15. New Plan: Treatment Priority: By 2012, a higher proportion of men with localized/regional stage prostate cancer on Watchful Waiting and men with advanced or recurrent prostate cancer will receive appropriate surveillance and/or active treatment including increased enrollment in clinical trials.

16. Treatment: Current Status Still no marker to differentiate between indolent or aggressive disease. Active treatment can be curative but affect QOL. Optimal care during “Watchful Waiting” not clear to men or primary care providers. Decision aids have been developed to help men make treatment decisions.

17. Treatment: Current Status Men with recurrent or advanced disease not well informed of options. Clinical trials undersubscribed.

18. Treatment: What’s Needed Improve the proportion of men diagnosed with advanced or recurrent prostate cancer who receive active treatment and/or are enrolled in clinical trials. Improve the proportion of men with localized/regional stage prostate cancer on watchful waiting who receive cancer specific follow up care.

19. Treatment: Progress Markers Tools developed that will be used to establish a baseline and to monitor the percentage of men with advanced or recurrent prostate cancer who receive appropriate active treatment and/or are enrolled in clinical trials. Tools developed that will be used to establish a baseline and to monitor the percentage of men with localized/regional stage prostate cancer on Watchful Waiting that are not receiving appropriate cancer specific follow up.

20. Treatment: Progress Markers Complete surveys and/or analysis of information from cancer registries to evaluate the percentage of men with advanced or recurrent prostate cancer who receive appropriate active treatment and/or are enrolled in clinical trials. Complete surveys and/or analysis of information from cancer registries to evaluate the percentage of men with localized/regional stage prostate cancer on Watchful Waiting that are not receiving appropriate cancer specific follow up.

21. Treatment Advanced or Recurrent Disease: Objective By 2012, the percentage of men diagnosed with advanced or recurrent prostate cancer that receive active treatment and/or are enrolled in clinical trials will be measured through the use of surveys and/or cancer registries. Based on these findings, develop means to improve the percentage of men diagnosed with advanced or recurrent prostate cancer who receive active treatment and/or are enrolled in clinical trials.

22. Treatment: Watchful Waiting Objective By 2012, the proportion of men with localized/regional stage prostate cancer on Watchful Waiting who are not receiving cancer specific follow-up will be measured through the use of surveys and/or cancer registries. Based on these findings, develop means to improve the proportion of men with localized/regional stage prostate cancer on Watchful Waiting who receive appropriate prostate cancer specific follow up care.

23. Treatment Watchful Waiting: Strategies Conduct studies to determine the most appropriate interval for periodic examination of patients managed by the watchful waiting approach. Conduct studies to determine the appropriate endpoint that defines when the watchful waiting approach should be replaced with active treatment.

24. Treatment - Watchful Waiting: Strategies Develop and disseminate information to patients and providers about the appropriate follow up when managed with watchful waiting.

25. Treatment Advanced or Recurrent Disease: Strategies Support existing/develop information resources such as hotlines and directories for men diagnosed with advanced or recurrent prostate cancer. Develop/disseminate information to patients with advanced or recurrent prostate cancer and providers about the appropriateness of active treatment and/or clinical trials.

26. Survivorship

27. New Plan: Survivorship Priority By 2010, practice guidelines and educational materials will be available for professionals and survivors/families that address prostate cancer symptom management across the survivor continuum to decrease morbidity.

28. Survivorship: Priority By 2010, practice guidelines and educational materials will be available for professionals and survivors/families that address prostate cancer symptom management across the survivor continuum.

30. Survivorship: Current Status Men with prostate cancer are the second largest group of cancer survivors. Little information is available to assist men and their families with survivorship issues. Managing symptoms that have resulted from the disease or the treatment for it is one of most troublesome issues for survivors.

31. Testimonies by Survivors to the President’s Cancer Panel “ ….loss of libido is really tough … I was very conscious of my wife and her needs….. It was probably the most difficult side effect that I had to live with…” 63 yr. old survivor

32. Testimonies by Survivors to thePresident’s Cancer Panel “ After surgery I had erectile dysfunction and incontinence. I went into extreme deep depression.... Single, living alone, did not know of a support group…” 67 yr. old survivor

33. Prostate-Specific Symptoms Urinary Incontinence Bowel Problems Erectile Dysfunction Hormone Imbalance

34. Survivorship: Current Status Symptoms can extend for a number of years following treatment and are associated with lower QOL and more emotional distress among men and their partners. Men typically followed for only 6 months by their cancer specialist. Primary care providers often unaware of or lack time to address cancer survivor issues.

35. Survivorship: What’s Needed? Prostate-specific practice guidelines to assist providers to deliver ongoing care to survivors and their family members, including health related quality of life (HRQOL) concerns. Access to the latest educational materials on prostate cancer symptom management for survivors, families and providers.

36. Survivorship: Progress Markers Practice guidelines for prostate cancer symptom management have been developed for providers. Educational materials for prostate cancer symptom management have been developed for providers and survivors/families.

37. Survivorship: Objective One By 2010, develop and distribute practice guidelines for prostate cancer symptom management to Michigan primary care providers and pertinent specialists.

38. Survivorship: Objective Two By 2010, provide educational materials for prostate cancer symptom management to prostate cancer survivors and their families that are culturally sensitive and at an appropriate reading level.

39. Survivorship Strategies: Practice Guidelines Identify the content for symptom management at the different phases of prostate cancer survivorship. Develop practice guidelines that are age- specific and culturally appropriate.

40. Survivorship Strategies: Practice Guidelines Develop strategies to facilitate implementation of the guidelines during the critical transition from specialty care to follow-up care by primary care providers. Develop a process to distribute the guidelines to health care providers and to survivors / families in Michigan.

41. Survivorship Strategies: Practice Guidelines Develop a method to evaluate the effect of the practice guidelines on the health related quality of life of survivors and families in Michigan.

42. Survivorship Strategies: Educational Materials Identify needs of survivors through literature review and focus groups. Identify existing educational materials relevant to prostate cancer survivors and families that will address their information needs.

43. Survivorship Strategies: Educational Materials Identify gaps in existing prostate cancer educational materials. Adopt, adapt, develop patient education material for prostate cancer survivors and their family members. 5. Develop a process to distribute symptom management educational materials to providers and survivors/families in Michigan.

44. Survivorship Strategies: Educational Materials Develop a method to evaluate how the utilization of educational materials affects the health related quality of life of survivors and families in Michigan.

45. Take away message “The most rational approach to treating prostate cancer includes not only adding years to life ….but also adding life to years”. Litwin et al. (1995)

46. ACPC Recommendations The ACPC recommends that the MCC: Accept the Prostate Cancer Control Plan for Michigan (Updated 2005). Adopt the survivorship goal and its objectives as the next prostate cancer priority to be addressed collaboratively by the MCC member organizations.

47. 2005 MCC Prostate Cancer Early Detection Recommendations Men who may be candidates for early detection: Men age 50 with life expectancy of at least 10 years. Higher risk men starting at age 45.

48. 2005 MCC Prostate Cancer Early Detection Recommendations Higher Risk Men African Americans Men with family history first degree relative(s) Men with strong family history – early age at diagnosis, multiple family members Men with BRCA1 or 2 mutation

49. 2005 MCC Prostate Cancer Early Detection Recommendations Men who are NOT candidates for early detection: Men younger than age 50 of average risk Men of any age with less than 10 years of life expectancy Men with suspected or known prostate cancer Men with symptoms should receive diagnostic evaluation

50. 2005 MCC Prostate Cancer Early Detection Recommendations All candidates for early detection should be fully informed of potential risks and benefits before being tested.

51. 2005 MCC Prostate Cancer Early Detection Recommendations Counseling should address key points: Prostate cancer is an important problem. Benefits have not been proven but early detection MAY save lives. Early detection and treatment MAY prevent future cancer-related illness. Treatment of prostate cancer does have risks that should be carefully evaluated before making a decision to be treated.

52. 2005 MCC Prostate Cancer Early Detection Recommendations Key counseling points (continued) Both DRE & PSA can have false positives and false negatives. An abnormal test may require further evaluation. Risk of developing prostate cancer increases with age. African American men and men with a family history are at highest risk of getting & dying from prostate cancer. Refer men to CDC booklets

53. 2005 MCC Prostate Cancer Early Detection Recommendations After men receive information, health care providers should: Address any patient concerns. Facilitate a shared decision-making process. IF the man chooses to be tested, both a DRE and PSA should be done.

54. ACPC Recommendation The ACPC recommends the MCC Endorse the revised Prostate Cancer Early Detection Recommendations.