Georgia Cancer Survivorship Conference

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• Georgia Cancer Survivorship Conference
• Disparities in Cancer Survivorship
• - From Diagnosis to Intervention
• September 27, 2007
• Sandra White, MD and Nancy Rodriguez, RN
• Blue Cross Blue Shield of Georgia

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Blue Cross Blue Shield of GeorgiaMISSION and
VALUES

• To improve the lives of the people we serve and
  the health of our communities
• To actively pursue ways to improve service and
  quality

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Disparities in Cancer Survivorship - From
Diagnosis to Intervention

• Agenda
• Disparate Information Intervention Education
  Awareness BCBSGA Breast Cancer Care Program -
  key messages
• Process of Care Description Community Needs
  Assessment
• Identify Potential Disparities Cohort Study
• Long-Term Survivorship
• Next Steps

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• Blue Cross Blue Shield of Georgia
• Breast Cancer Care Program

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Timeline of the BCBSGa Breast Cancer Care Program
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Recognizing Disparities in Breast Cancer Care and
Survivorship

• Elements of Quality Breast Cancer Care

Breast Conserving Surgery (BCS) Radiation (XRT)
after BCS Dose Intensity of Chemotherapy Hormone
Therapy
Mammography Early Stage at Diagnosis
Pain Anemia
Feedback Evaluation Satisfaction Survey
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Intervention Development Focus Groups
Elicitations

• When a patient does not understand fully in the
  beginning,
• survivorship may be compromised resulting in
  increased morbidity
• and mortality.

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Intervention Focus Groups Elicitations

• BCBSGa Advisory Panels
• Specialist and non-specialist physicians
• Laypersons cancer survivors, support group
  facilitators, and leaders from community cancer
  support organizations
• Advised on barriers to treatment, key messages,
  and provided program recommendations

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Intervention Focus Groups Elicitations

• Suggest further research to identify potential
  disparities which would drive targeted
  interventions
• BCBSGA and HealthCore - retrospective cohort
  analysis
• Retrospective Administrative Claims Data and
  Chart review Cohort Study
• New episodes of breast cancer from January 2000
  to August 2005
• HealthCore (a WellPoint subsidiary) - clinical
  research and health outcomes company

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Intervention Focus Groups Elicitations

• Understanding the Diagnosis
• Diverse Audience
• Specialist and non-specialist physicians
• Patients w/ different educational backgrounds,
  literacy levels, racial ethnic groups, personal
  health history
• Stress of a diagnosis impacts comprehension
  retention of information

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Intervention Focus Groups Elicitations

• Understanding Treatment Options
• Much available information, BUT
• Where to look?
• Is it accurate?
• Is it accessible?
• Misinformation too much, too little, incorrect,
  unclear, misunderstood

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Disparity Intervention Education Awareness

• The Bottom Line
• Information must be available when the patient is
  ready to need it

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Intervention Development Making Treatment
Decisions

• What are patients understanding when making
  treatment decisions?
• Why do people choose one treatment over another
  treatment?

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Making Treatment Decisions

• Issue Diverse Audience
• Recommendation
• Materials should target a 6-8th grade reading
  level
• Physicians need tools to assist them with patient
  discussions
• Non-oncology physicians (PCP, OB/GYN) should
  receive information to direct patient to
  appropriate specialty care

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Making Treatment Decisions

• Issue Stress of a diagnosis impacts
  comprehension retention of information
• Recommendation
• Optimal use of tools to support informed decision
  making is facilitated through distribution near
  the time of diagnosis
• Materials should be available to physicians
  discussing a new diagnosis and treatment options
  with the patient

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Making Treatment Decisions

• Issue Much available information, BUT
• Where to look?
• Is it accurate?
• Is it accessible?
• Recommendation
• Community partnerships and other venues are
  useful to disseminate information resources
• A checklist tool will guide the patient through
  the process of investigating treatment decisions
  founded on accurate information

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Making Treatment Decisions

• Issue Misinformation too much, too little,
  incorrect, unclear, misunderstood
• Recommendation
• Patients and physicians should be equipped with
  complete information on current treatment
  guidelines
• Consistent information is desirable
• Physicians and health insurance plans are
  reliable sources of healthcare information

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Making Treatment Decisions

• Key messages for patients and physicians
• Key messages for patients and physicians
• ."GET IT RIGHT THE FIRST TIME, you dont get a
  second chance"
• Early detection, and deal with it right away and
  fully
• Assemble a team to talk to the patient.
• Have the pathology report at all physician
  visits to assist treatment plan selection.
• Get a second opinion about treatment
  recommendations.

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Disparity Intervention Informed Decision Making

• Treating a preference-sensitive cancer such as
  breast cancer requires enhanced educational
  effort and decision support tools.

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InterventionEducation Awareness

• BCBSGa Breast Cancer Care Program
• Objectives
• Program components purpose and description
• Implementation
• Feedback and evaluation
• Lessons learned

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Education Awareness

• BCBSGa Breast Cancer Care Program
• Objectives
• To improve the care and treatment of breast
  cancer patients within accepted standards of care
  and best practices
• To promote informed decision making and
  discussions between the patient and her health
  care team
• To offer frontline support to patients with
  breast cancer

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Education Awareness

• BCBSGa Breast Cancer Care Program Components
• Four educational materials developed by BCBSGa
  and three relevant books were donated.
• Guided by input from physician and layperson
  advisory panels materials were written in a 6-8th
  grade reading level, provide information about
  all phases of cancer treatment and psycho-social
  support.

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Education Awareness

• BCBSGa Breast Cancer Care Program Components
• BCBSGa Resource List
• offers support and additional assistance-based
  organizations (legal, financial, transportation,
  advocacy, and educational resources) to breast
  cancer patients and their caregivers
• useful during initial diagnosis and for long term
  resources

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Education Awareness

• BCBSGa Breast Cancer Care Program Components
• BCBSGa Patient Guide to Understanding Breast
  Cancer
• reinforces patient rights and empowerment in
  cancer treatment
• contains information on topics related to breast
  cancer, outlining diagnosis, staging, treatment
  and guidelines (Susan G. Komen For the Cure Fact
  Sheets)
• designed to provide breast cancer patients with
  basic information to understand and cope with
  their disease

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Informed Decision Making

• BCBSGa Breast Cancer Care Program Components
• BCBSGa Patient Checklist of Questions to Ask the
  Doctor
• suggests questions for the patient to ask the
  doctors at each stage of treatment
• designed to help patients arrive at treatment
  decisions they are comfortable with

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Informed Decision Making

• BCBSGa Breast Cancer Care Program Components
• BCBSGa General Treatment Guidelines for Breast
  Cancer
• provides information on diagnosis, staging of
  breast cancer and the related treatment decisions
  or options
• a quick reference tool designed for physicians
  who are not oncology specialists, to discuss
  breast cancer treatment options with their
  patient in general terms

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Informed Decision Making

• BCBSGa Breast Cancer Care Program Components
• Understanding Breast Cancer gives a brief
  overview of breast cancer and treatment options
• Eating Well with Cancer contains suggestions
  for dealing with the effects of treatment and
  good recipes to try
• Working with Cancer discusses working and a
  career, with space to record important
  information
• supplied by Roche Laboratories

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BCBSGa Breast Cancer Care Program Implementation

• Implementation
• Program outreach initiated in September 2005
  with
• CME for physicians
• Diversity training for 24-hour Nurse OnCall staff
  community based organizations (CBO) assisted
  with discussion of unique perspectives of various
  audiences and cultural sensitivity
• Listing of CBOs offering variety of support
  services
• Members w/ breast procedure in 2004 and forward
• All physician practice locations

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BCBSGa Breast Cancer Care Program Implementation

• Outreach
• September 2005 March 2006 Initial Phase
  (retrospective/look-back) patients dx
  2004-3/2006
• As of April 2006 Ongoing Phase (concurrent
  w/in 45 days of claim) patients dx
  4/2006-current
• 13,000 information packets to BCBSGa patients
• 5,200 individual physicians at 7,800 practice
  locations (PCP, OB/GYN, General Surgeons and all
  Oncology Specialists)
• 16,500 component pieces distributed on request
  to CBOs, oncology practices, cancer centers
  individuals regardless of insurance coverage or
  state of residence
• Website access also available for download with a
  link to Clinical Trials information at GA Cancer
  Coalition

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BCBSGa Breast Cancer Care Program Feedback
Evaluation

• Survey
• Included with each set of materials distributed
• Rate each item for level of helpfulness or
  usefulness
• Evaluate the desired outcome or intended use of
  the materials
• Graded on a rating scale of 5 strongly agree to
  1 strongly disagree
• Rate of return for surveys included with mailed
  packets is around 3

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BCBSGa Breast Cancer Care Program Feedback
Evaluation

• Survey
• Limitations
• Initially, a significant time lag between claim
  and mailing. Many comments reflected too late
  or already finished treatment
• Nonetheless, patients commented would have been
  helpful to me compared with other information
  I gathered, this was as good or better
• Patients were selected based on claim for breast
  cancer or breast procedure picked up those w/
  biopsy subsequently rated as benign,
  non-cancerous, etc.
• Patients commented will keep or pass it along

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BCBSGa Breast Cancer Care Program Feedback
Evaluation

• Feedback and Evaluation
• Resource Listing
• Supportive messaging most valuable, pertinent in
  both immediate diagnosis and long-term timeframe
  as a survivor.
• Might consider additional resources for inclusion
• Patient Education Book
• Key aspects promote understanding, coping and
  scope of topics
• Both MDs and patients rated highly an important
  tool for questions that arise during the
  diagnosis, treatment and survivor stages
• Costly to produce, so consider alternate access
  mechanism

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BCBSGa Breast Cancer Care Program Feedback
Evaluation

• Feedback and Evaluation
• Patient Checklist
• An important component of informed decision
  making, and patients used the layout and content
  of this tool to validate what their doctor told
  them
• Physician interpersonal communication skills are
  a key factor in discussing treatment options, and
  a patients need for concrete directive
  recommendations for care
• The Checklist may require additional explanation
  for most effective use
• Understanding Breast Cancer (highest rated in
  Ongoing phase)
• General information about breast cancer, staging,
  and treatment
• Value as a concurrent tool with information early
  in the diagnosis and treatment process

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BCBSGa Breast Cancer Care Program Feedback
Evaluation

• Feedback and Evaluation
• Eating Well Through Cancer
• Helpfulness was highest single element in I phase
  and 2nd highest in O phase
• During the active treatment phase empowers
  patient to manage the effects of treatment
• Over time, promotes ongoing health management,
  supporting healthy survivorship
• Symptom-based suggestions make it valuable to our
  Disease Management staff and PCPs for their
  diverse patient needs
• Working with Cancer Workbook
• Concurrent tool as patient moves through the
  diagnosis and treatment process, supports an
  informed consumer.

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BCBSGa Breast Cancer Care Program Feedback
Evaluation

• Feedback and Evaluation
• General Treatment Guidelines for Physicians
• As a brief and concise tool it assist the
  non-oncology physician
• Can serve the needs of a nurse Case Manager as
  part of a Job Aid.
• The Community Resource Listing
• Nurses use this list for patient referrals to
  other resources and support.
• Community organizations have requested their
  addition to this list, recognizing the value of
  linking patients with the services they offer.

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BCBSGa Breast Cancer Care Program Feedback
Evaluation

• Evaluation Summary
• Program materials are consistent with ICSI
  Pertinent Clinical Highlights and Priority Aims
  related to
• Offering psycho-social support
• A multi-disciplinary approach
• Using standardized materials to facilitate
  informed decision making by providing access to
  information and discussion of options
• Standardizing follow-up schedules
• Promoting clinical trials
• Personal introduction of materials may be more
  effective for more complex items (Checklist and
  Workbook)
• Concurrent tools may need a different
  distribution mechanism to get them to the patient
  when they can be most useful

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BCBSGa Breast Cancer Care Program Lessons Learned

• Patient selection based on a paid claim and
  pertinent procedure code may add processing time
  prior to mailing the information.
• Initiating the mailing based on a submitted claim
  might provide patients with the information while
  it could impact the treatment decision.
• Need to continue to work to resolve distribution
  barriers.

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BCBSGa Breast Cancer Care Program Lessons Learned

• Breast cancer is a very complex disease and
  treatment decisions are highly personal.
  Therefore, it is impractical to develop an
  educational component addressing just one element
  of breast cancer treatment.
• A comprehensive program is desirable.
• To decrease mortality from breast cancer, we need
  to
• Encourage breast cancer screening for early
  detection
• Provide education materials which facilitate
  informed decision making
• Promote a patients selection of treatment that
  is consistent with Standard of Care Treatment
  Guidelines

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Process of Care

• Community Needs Assessment
• Information delivery variables when, where,
  what and how?

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Process of Care

• Community Needs Assessment
• Rollins School of Public Health at Emory
  University (May 2007)
• To identify the processes related to breast
  cancer diagnosis through treatment in facilities
  covered by BCBSGa insurance
• To determine the best point of time and
  procedures to insert an educational program that
  promotes communication between patients and
  providers regarding shared and informed
  decisions for treatment and next actions

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Process of Care

• Community Needs Assessment
• Information needs of breast cancer patients
  change over time.
• After diagnosis, breast cancer patients may
  require information about treatment options
• traditional and non-traditional treatment
  practices
• the patients process of care
• the patients time invested in their own health
• other issues that may arise that could conflict
  with ones care
• At the completion of treatments, patients may
  require information regarding
• continuing social support
• chances of recurrence
• being in remission

42
Process of Care

• Community Needs Assessment
• Personal interview survey of healthcare
  facilities to discover
• the variety of services and processes of breast
  cancer treatment and care at the facility,
  including the patient referral process
• the individuals involved with these processes
  within various facilities
• use and origins of materials
• potential barriers and issues

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Process of Care

• Community Needs Assessment
• Interviews were also completed with 6
  community-based organizations (CBOs) whose focus
  is on education and social/financial support, as
  opposed to clinically oriented care
• Interviews with 5 treatment facilities that focus
  on chemotherapy and/or radiation were also
  completed to provide additional data for
  comparison of treatment processes

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Process of Care

• Community Needs Assessment
• The Process - Diagnosis
• Process of diagnosis (need for a biopsy) may be
  by the referring physician or PCP, or the
  radiologist /facility performing the mammogram.
• Discussion of findings (cancer diagnosis) varies
  and may be by the referring physician, i.e.,
  surgeon or PCP, the radiologist or pathologist,
  or the person doing a procedure.

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Process of Care

• Community Needs Assessment
• The Process - Communication
• Findings may be communicated in person or in
  some facilities by telephone.
• Treatment discussions may occur with a surgical
  oncologist, the referring physician, a tumor
  board (without patient input).

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Process of Care

• Community Needs Assessment
• The Process - Treatment
• Patients are informed as soon as possible,
  usually about 2 days.
• Treatment - In-house facilities try to start
  treatment immediately.

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Process of Care

• Community Needs Assessment
• The Process - Treatment
• Physicians, radiologists or referring, are
  usually the source of education with patients.
  
• After a treatment decision is made, some of the
  facilities surveyed pair patients with a nurse
  navigator who then maintains frequent or
  consistent contact with the patient throughout
  their treatment process.

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Process of Care

• Community Needs Assessment
• The Process - Support
• Role of the Nurse Navigator This individual may
  perform a variety of services such as
• serving as a sounding board for patients to
  discuss and clarify questions regarding their
  treatment
• aligning patients and their families to
  appropriate classes and resources
• checking on patients throughout their care
  process
• In some facilities, these navigators also match
  patients up with mentors who help to fulfill the
  social aspect of the navigator position.

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Process of Care

• Community Needs Assessment
• The Process - Support
• Before starting treatment (nurse navigator)
• Assures coverage under ones insurance policies,
  or finding possible ways of coverage through
  alternative resources
• Confirms availability in regards to work and
  family life, social and family support
  opportunities, and other personal considerations
• Patients may also undergo pre-emptive testing
  prior to starting treatment to ensure their
  physical conditions can sustain treatment and
  should therefore plan appropriately

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Process of Care

• Community Needs Assessment
• The Process - Education
• Educational materials and services vary greatly
  across facilities.
• Some offer brochures provided by drug companies
  regarding medications and side-effects
• More comprehensive programs utilize a number of
  methods and participation options
• Basic brochures, booklets, and videos
• Educational classes - topics include nutrition,
  stress reduction, spiritual issues, financial
  concerns, and therapeutic options
• Important to repeat information, because patients
  often forget a lot of what they are initially
  told about their upcoming cancer journey

51
Process of Care

• Community Needs Assessment
• The Process - Resources
• Community resources for breast cancer patient
  education are utilized by a some facilities.
• Two locations use American Cancer Society (ACS)
  resources
• patient navigators to help patients find local
  resources and support
• the HOPE Lodge, a facility for family visiting
  from out-of-town
• Two locations use the "Look Good, Feel Better"
  program that focuses on helping women look and
  feel normal despite their changing appearance
  caused by their cancer treatments

52
Process of Care

• Community Needs Assessment
• The Process - Resources
• Many of the facilities utilize established social
  support networks such as Bosom Buddies and Breast
  Friends
• Other community resources include the Lymphoma
  Foundation, social workers, nutritionists, and
  product samples donated by skin care companies

53
Process of Care

• Community Needs Assessment
• The Care Process Limitations
• Barriers and Issues
• Lack of a standardized care process within and
  between practices may be a contributor to
  patients becoming lost between the cracks, and
  receiving suboptimal care and education
• The physicians limited schedule restricts the
  physician-patient interaction, and oftentimes a
  patient may feel rushed through the
  decision-making and treatment planning process

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Process of Care

• Community Needs Assessment
• The Care Process - Limitations
• Barriers and Issues
• How a patient receives her diagnosis is variable
  what the patient is told, how she is told, and
  support that is offered.
• Some facilities notify patients of their
  diagnosis by telephone
• Others provide such information in person in
  order to provide an opportunity for counseling
  and education about breast health, regardless of
  the biopsy result
• It is important to note that those centers that
  notify patients by phone insist doing so is an
  effort to minimize the anguish incurred during
  the drive to the facility in anticipation of
  results

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Process of Care

• Community Needs Assessment
• The Care Process - Limitations
• Barriers and Issues Other limitations to care
  include
• Delayed appointments
• Difficulties in maintaining patient follow-up
• The Avon Foundation Comprehensive Breast Center
  at Grady Memorial Hospital has a predominantly
  indigent and minority patient population with
  several distinct cultural barriers to care
• a mistrust of the medical system
• a lack of preventive health behaviors
• a failure to show up for appointments as a result
  of more pressing personal and family matters

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Process of Care

• Community Needs Assessment
• The Care Process - Limitations
• Barriers and Issues
• Community-based organizations felt they were a
  key component of medical institution programs and
  want to increase partnership

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Identify Potential Disparities Cohort Study

• Objectives
• Methods
• Preliminary Conclusions
• Disparities and Recommendations

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Identify Potential Disparities Cohort Study

• Objectives
• To examine the demographic and descriptive
  characteristics of newly-diagnosed patients with
  breast cancer
• To determine stage of cancer at diagnosis in the
  chart-abstracted population
• To assess treatment patterns for new episode
  breast cancer patients
• To determine appropriateness of supportive care
  for breast cancer therapy using chart-abstracted
  data

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Identify Potential Disparities Cohort Study

• Methods
• Retrospective Administrative Claims Data Cohort
  Study
• New episodes of breast cancer from January 2000
  to August 2005 (n3,017)
• Medical chart review was performed on 766
  patients for
• Demographics
• Race/Ethnicity and SES
• Treatment patterns based on National
  Comprehensive Cancer Network (NCCN) 2004
  Guidelines
• Stage and receptor status

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Identify Potential Disparities Cohort Study

• Characteristics
• African American (AA) patients (mean age 49
  years) were younger at diagnosis than Caucasian
  (CAU) patients (mean age 53 years) (p
• Analysis by age categories (years, and 50 years) showed that younger age
  was associated with higher stage at diagnosis
  (p
• Unadjusted

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Identify Potential Disparities Cohort Study

• Figure 3 Geographic data for chart-abstracted
• population (n766)
• Geographic data was based on patient ZIP codes
  from the claims data and determined using
  rural-urban commuting area codes (RUCA).

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Identify Potential Disparities Cohort Study

• Figure 4 Race data for chart-abstracted
  population (n766)

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Identify Potential Disparities Cohort Study

• Chart-based Treatment Patterns by Stage and Race
• Overall percentages of patients who appeared to
  receive treatment consistent with 2004 NCCN
  Guidelines was high
• stage 0 73 stage I 88 stage II 96 stage
  III 93

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Identify Potential Disparities Recommendations

• Awareness
• Engagement
• Treatment
• Support

65
Identify Potential Disparities Recommendations

• Awareness
• Screening and early detection increase
  availability and culturally appropriate messaging
  about importance of mammography screening
• Real time access to information at the point of
  care
• Patient and clinician tools and information on
  breast cancer for shared treatment decisions
• User-friendly access to materials and printing
  from website

66
Identify Potential Disparities Recommendations

• Engagement
• Decision support tools for preference sensitive
  treatment/management
• Coordination of care (providers, benefits, and
  community resources)
• Promote use of Personal Health Record in 360
  Health at bcbsga.com
• Access to care oncologist consultation
• Possible link with Georgia Telemedicine
• Promote community relationships to extend
  outreach and use of materials

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Identify Potential Disparities Recommendations

• Treatment
• All breast cancer patients to have oncology
  consultation to discuss treatment options
• MDs should consistently recommend standard of
  care treatment, including participation in
  clinical trials when appropriate
• Diagnosis and Testing Pathology Report on chart
  containing disease-specific testing parameters
  (e.g. Staging, ER/PR status, etc) as the basis
  for treatment
• Survivorship Care Plan / End of Treatment Summary
  for patient and PCP prepared by Oncologist and
  containing
• diagnosis (pathology) and testing information
• treatments received
• information on potential side effects / long-term
  effects of treatment
• recommended follow-up monitoring

68
Identify Potential Disparities Recommendations

• Support
• Promote 24-hour Nurse Call Line as initial
  contact point at diagnosis
• Develop breast cancer care Job Aid
• Implement Oncology Care Management program for
  all LOB
• Focus on referrals to behavioral health resources
  and community support groups
• Revise Resource List to include additional
  pertinent resources based on feedback
• Provide direct link to noted resources when
  Resource List is viewed online
• Provide tools to empower patient during treatment
  and promote healthy survivorship

69
Long-Term Survivorship

• Patients and health care providers each have a
  role in healthy survivorship
• and long-term monitoring.

70
Long-Term Survivorship

• BCBSGa CME Program Late Effects of Cancer
  Treatment and Survivorship
• Transition of care following treatment
• Survivorship Online CME program available at
  www.cemedicus.com/cancersurvivorship
• (alternate access to the CME is described on the
  final slide)

71
Long-Term Survivorship

• Survivorship Care Plan / End of Treatment Summary
  as a means to
• Facilitate patient/physician communication
• Educate the non-specialist for late effects of
  cancer therapy
• Define the role of the patient in long-term
  self-monitoring

72
Next Steps

• Initiated a demographic analysis of BCBSGa
  members related to breast cancer screening and
  diagnosis, colorectal cancer screening, and
  diabetes
• Developing culturally appropriate initiatives to
  promote early diagnosis and to enhance treatment,
  documentation and transitions of care
• BCBSGa Medical Management Care Model and 360
  Health personal health tools and records
• Enhanced access to materials through technology,
  partnerships, and point of care processes

73
Disparities in Cancer Survivorship - From
Diagnosis to Intervention

• Questions?
• Alternate access to CME Program
• Go to website www.bcbsga.com and "Enter" the
  Provider website, then click on Plans and
  Benefits, then click on CME Course. If you click
  on the Cancer Survivorship program it will take
  you into Dynamic CME. Unless you have a provider
  ID (based on your position) you may need to
  register in Dynamic CME. I set myself up as a
  nurse, and was able to go through the
  registration process. Then I was able to access
  the program.
• If you do not have a provider number, and wish to
  obtain CE credit, on the renewal form or the
  online CE section, under the section labeled
  "Provider Number," you will need to enter CME
  Category 1, instead of a BRN Provider Number.