Awareness of unique characteristics of prostate cancer an

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MCC Prostate Cancer PriorityReview

• Angela Fagerlin, PhD, David Rovner, MD, Richard
  Wimberley, MPA,
• Judith Suess, MD, MPH
• February 18, 2004

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Outcomes for MCC Board members

• Awareness of unique characteristics of prostate
  cancer and resulting controversies
• Understanding of accomplishments, ongoing efforts
  and future work of Prostate Cancer Action
  Committee to implement prostate cancer priority
• Recommendations for focus in prostate cancer for
  next two years

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Prostate Cancer 101

• Biologically heterogeneous with indolent and
  aggressive forms, e.g., die with the former, die
  of the latter. Contradicts usual meaning of
  cancer
• 75-80 of autopsies prostate cancer cells
• ACS projected figures for U.S. 2004 192.6/100K
  Incidence (I) and 34.3/100K Mortality (M) from
  prostate cancer?18 (1 in 6) of men who get
  prostate cancer die of it

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Prostate Cancer 101

• Screening at this time cannot differentiate
  indolent from early stage of aggressive form of
  prostate cancer
• Standard treatment of early disease does not
  decrease disease specific mortality and results
  in significant side effectsimpotence, urinary
  incontinence, bowel incontinencetemporary or
  permanent
• Treatment of more advanced disease does save lives

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Prostate Cancer 101

• Current Issues
• Obesity may be a factor in aggressiveness
• Racial disparity in prostate cancer care
• Use of new technologies to treat prostate cancer
  usually without compelling proof of benefit
• Laparoscopic radical prostatectomy
• Cryosurgeryconsidered standard treatment by
  minority
• Widespread use of alternative therapies for
  prostate cancer

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Prostate Cancer in Michigan

• Most commonly diagnosed form of cancer (other
  than skin cancer) 2nd leading cause of cancer
  mortality in men.
• All cause mortality 1,131.4/100K mortality due
  to prostate cancer 32.6/100K?3 mortality due to
  prostate cancer among Michigan men in 2001

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Prostate Cancer in Michigan

• Mortality was increasing, peaked at 43/100,000
  (/100K) in 1993 ? to 32.6/100K by 2001
• Shift in stage at diagnosis in Michigan
  1985 localized 57.6 metastatic 15.7
  2000 localized 76.4 metastatic 2.4
• Screening with Prostate Specific Antigen (PSA)
  more common starting in 1997 with ACS endorsement
  
• Is there a causal association between increased
  screening and the above data? Answer Unknown,
  clinical trials ongoing

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Prostate Cancer in Michigan

• Racial disparity
• Incidence among black men 1.6 times that of white
  men mortality 2.0 times that of white men
• Diagnosed at earlier age in African Americans
  than in white men
• Average years of life lost per prostate cancer
  death 9.5 years for blacks, 9.1 years for whites
• Is prostate cancer a more aggressive disease in
  African Americans or is worse outcome due to
  access/treatment issues?

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How was MCC Prostate Cancer Priority chosen?

• Prostate Cancer Advisory Committee formed in 1992
• 1995 Michigan Prostate Cancer Consensus
  Conference?Consensus Statements and
  Recommendations for Further Study
• In 1998 a number of issues in prostate cancer
  were given to the MCC to be considered

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How was MCC Prostate Cancer Priority chosen?

• MCC prioritized recommendations to impact
  mortality and /or morbidity from cancer
• Taking into account the science and the
  uncertainties of prostate cancer, and areas of
  agreement among stakeholders, the prostate cancer
  priority was chosen

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MCC Prostate Cancer Priority

•     By 2002, 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 patient
  education activities. (Implementation of the MCC
  priorities was extended to 2005)

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MCC Prostate Cancer Priority

• The Prostate Cancer Education project, which
  began in September 1999, has four phases
• Survey of knowledge and understanding among men
  newly diagnosed with prostate cancer
• Review of existing prostate cancer treatment
  educational materials
• Development of new educational materials
• Dissemination of materials to health
  professionals and patients newly diagnosed with
  prostate cancer

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Survey of knowledge and understanding of recently
diagnosed patients

• Are we doing an adequate job at informing
  prostate cancer patients before treatment?
• Are there demographic factors that affect
  patients knowledge and attitudes regarding
  prostate cancer?

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Survey Domains

• Patient understanding of their own prostate
  cancer
• Patient understanding of prostate cancer in
  general
• Patient understanding of treatment options
• Patient understanding of side effects/QOL outcome
• Patients sources of prostate cancer information

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Survey Implementation

• Patients recruited from 9 sites located
  throughout Michigan
• Convenience sample of men newly diagnosed with
  prostate cancer identified by participating
  urologists
• Computer Assisted Telephone Interview
• higher response rate
• rapid patient contact
• decreases literacy concerns

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Demographics
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Prostate cancer can spread to the bone
74 of European American men knew prostate cancer
can spread to the skeleton compared to 46 of
African American men
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Know PSA?
92 of European American men reported learning
PSA results compared to 69 of African American
men
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Discussed Treatment Options
96 of European American men said the physician
discussed treatment compared to 82 of African
American men
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Discussed side effects
93 of European American men said the physician
discussed side effects compared to 85 of African
American men
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Knowledge of QOL
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Survey Conclusions

• First survey of patient knowledge and
  understanding in men newly diagnosed with
  prostate cancer
• Patient education before treatment
• ROOM FOR IMPROVEMENT
• Patient educational materials (PEMS) need to take
  socio-demographic factors into account and
  consider the vulnerability of low SES and
  cultural differences

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Review of prostate cancer treatment educational
materials

• Obtainment of materials (brochures, videotapes,
  CD-ROMS, web-sites)
• Contacted prominent organizations
• e.g., NCI, comprehensive cancer centers,
  insurance companies, drug companies,
• Contacted prostate cancer experts (PCAC)
• Internet Search engines
• First-cut criteria
• Had to mention radical prostatectomy, radiation
  therapy, watchful waiting, and hormone therapy.
• Must focus on treatment not screening

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44 PEMS Evaluated

• 19 brochures
• 19 web-sites
• 4 VHS videotapes
• 2 CD-ROMs

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Method Evaluation

• Content Evaluation
• 54 key criteria coded present or absent by two
  coders
• Individual patient characteristics
• Clinical Condition
• Treatment
• Form/Structure of presentation
• Quality Review
• Accuracy and balance review
• Literacy evaluation

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Results Content Review

• Vast majority included appropriate detail about
  clinical information about the prostate (e.g.,
  psa, Gleason and staging of prostate cancer).
• Approx. 50 failed to included description of key
  elements of prostate cancer treatments
• De-emphasis on presence or severity of side
  effects

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Results Content Review

• Recurrence rates not provided.
• Only 50 included any numerical information about
  risk of side effects.
• Only one graph or table was found in any of the
  materials

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Results Quality Review

• Accuracy Review
• Very few misstatements were present.
• Information occasionally dated
• Balance Review
• Adequate, though some materials de-emphasized
  side effects
• Literacy Review
• Top 5 web sites and 4 of the 5 top brochures
  written at above the 9th grade reading level

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Summary

• While the majority of materials contained basic
  information, there is great room for improvement
• Inclusion of statistical information
• More realistic presentation of risks and benefits
  associated with treatments
• Lower readability levels

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Development of New Educational Materials

• Shared decision-making for all
• Based upon survey results, all literacy levels,
  diverse races/ethnic groups, questions patients
  have regarding prostate cancer
• Patient centered rather than doctor centered
• Diverse education, occupation
• MDCH booklet published 8/97

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Development of New Educational Materials

• Decision supports
• Explicit comparison of treatments with
  outcomes/side effects, disease process,
  laboratory results
• Consistent with values
• Explicit aids to relationship of patient values
  to decision making

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Development of New Educational Materials

• Design considerations
• Research on numbers/probability
• Research on Utilities theory of games
• Research on literacy available to high and low
  literacy individuals
• Answers patients questions as available
• Emotional impact of diagnosis
• Other resources Paper, web, groups, audio

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Development of New Educational Materials

• Multimode pilot
• Knowledge better with all 3 but no difference
  among
• Age/Health important for watchful waiting (WW).
  PC grows slowly, cryo experimental, WW had small
  effect on QOL
• Knew side-effects
• Knew all psa, grade, age, stage, health imp

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Development of New Educational Materials

• Multimode pilot
• Focus groups Black/White, Cancer/Non Cancer
  patients, all literacy levels
• Layout, knowledge?, emotions, information all in
  one place, some unhappy with choice, literacy,
  post decisional regret, diverse group of mens
  pictures, not worried
• Favorite format (booklet, audio, web) to be
  determined, for moment all available
• http//www.prostatecancerdecision.org/

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Dissemination of Materials

• Phase I Michigan Urologists
• Phase II CCOP managers, Urology Nurses,
  Radiation Oncologists, PCPs-postcard only
• Phase III MCC orgs, MI hospitals, MI Pharmacy
  Assn. Members, MAHP, MDCH sections, CA support
  groups, Prof conferences

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Where do we go from here?

• Tentative Criteria for process to use for
  revising or updating priorities
• State of the science
• If possible, areas of agreement among
  stakeholders
• Practical priority objective can be
  implemented, financially feasible
• Evaluation can be done
• Clinically significant in Michigan

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Where do we go from here?

• Revise current 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.

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Where do we go from here?

• Reconvene the Prostate Cancer Advisory Committee
  to evaluate advances in the state of the science
  and to delineate areas of agreement among
  stakeholders. Based on this information, guide
  the development of a Strategic Plan for Prostate
  Cancer for the MCC and the MDCH over the next
  twelve months.

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Where do we go from here?

• Distribute and evaluate the PEMs ensure
  accessibility of the PEMs in other languages, to
  ethnic and racial minorities, and to low literacy
  individuals.
• Focus on developing new partnerships to leverage
  the impact of MCC efforts the Michigan chapter
  of the AARP, the Greater Lansing African American
  Health Institute, and medical and nursing schools
  are examples of potential partners.

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Where do we go from here?

• Consider additional issues common to several or
  all of the five cancers of the MCCI such as
  shared decision making, issues for long term
  survivors, and disparities in cancer outcomes for
  future priorities.