p r esenter : paula miller
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P r esenter : Paula Miller. Overview. Wh o is the initiative team? Wh a t a r e t he f acts of Y oung W omen and b r ea s t c ancer in Ari z on a ? Wh a t needs w e r e ide n tified in y oung b r ea s t c ancer s u r vi v o r s in Ari z ona? - PowerPoint PPT PresentationTRANSCRIPT
Presenter: Paula Miller
• Who is the initiative team?
• What are the facts of Young Women and breast cancer in Arizona?
• What needs were identified in young breast cancer survivors in Arizona?
• Where do patients access resources and financial assistance in Arizona?
• What is the Arizona Breast Cancer Resource Guide?
Overview
Who is the Arizona Young Breast Cancer Survivor Support Initiative team?
MEET THE TEAM
Project Manager• Diagnosed with breast cancer at age 25• Advocate for breast cancer awareness among
young women• MPA in Healthcare Administration• Certified Recreational Therapist• Member - Arizona Comprehensive Cancer
Control Program, Quality of Life Workgroup• State Leader - Young Survival Coalition
Mikala Edwards, MPA, CTRS
What are the facts of Young Women and breast cancer in Arizona?
STATE CANCER FACTS
2009 State Breast Cancer Statistics
213 women diagnosed between ages 0-39 years
– 54.5% of cases were early stage*– 41.8% of cases were late stage*– 31.8% of cases were unknown stage
*Early Stage = in Situ and Local Stage; Late Stage = Regional and Distant using SEER Summary Stage
2009 Statistics by Race/Ethnicity
67.90% 63.70% 67.60% 64.40%
26.40% 28.90% 23.40% 29.90%
5.70% 7.40% 9.00% 5.70%
20.00%
0.00%
40.00%
60.00%
80.00%
100.00%
120.00%
White Non- Hispanic
White Hispanic
Black American Indian
Unknown Stage
Late Stage
Early Stage
*Early Stage = in Situ and Local Stage; Late Stage = Regional and Distant using SEER Summary Stage
2010 State Breast Cancer Statistics
219 women diagnosed between ages 0-39 years
– 42.5 % of cases were early stage*– 48.4% of cases were late stage*– 31.8% of cases were unknown stage
*Early Stage = in Situ and Local Stage; Late Stage = Regional and Distant using SEER Summary Stage
2010 Statistics by Race/Ethnicity
67.60% 63.00% 58.00% 59.80%
26.20% 28.60% 37.00% 28.90%
6.20% 8.40% 5.00% 11.30%
20.00%
0.00%
40.00%
60.00%
80.00%
100.00%
120.00%
White Non- Hispanic
White Hispanic
Black American Indian
Unknown Stage
Late Stage
Early Stage
*Early Stage = in Situ and Local Stage; Late Stage = Regional and Distant using SEER Summary Stage
Cooperative Agreement with the Centers for Disease Control and PreventionABOUT THE PROGRAM
– Reduce the female breast cancer death rate
• Three year agreement between CDC and John C.Lincoln Health Foundation
• Develop support and education awareness for young (<45 years of age) breast cancer survivors, their families and caregivers
• Develop educational resources to increase patientand provider knowledge
• Align with Healthy People 2020– Increase the proportion of cancer survivors who report physical
health-related quality of life similar to the general population
CDC Cooperative Agreement
Process Overview
• Provide input on functionality of website
• Identify needs of YBCS in Arizona• Establish steering committees to help
guide program– AYBCSOC
• Write & distribute needs assessment-statewide• Analyze needs assessment results• Vote on top priorities
– ABC Committee• Collaborate on available resources• Vote on most credible resources based on referrals
andusage
What needs were identified in young breast cancer survivors in Arizona?
NEEDS ASSESSMENT
Arizona Young Breast Cancer SurvivorOutreach Coalition (AYBCSOC)
• Purpose: Identify top priorities of YBCS• Composed of young survivors,
medical community, and community partners
• Provide advice and support for the needsassessment
• Select top 5 priorities based on data collected from needs assessment
• Recommendations for implementation of projectplan
• AYBCSOC– presented with a ‘needs’ report including:
• Medical, Daily, Emotional, and Relationship Needs
– Narrowed needs to top 11, based on responses byassessment participants
– Formal, anonymous, online vote identified top 5 priorities
Identifying Top Priorities
• Top Five Needs Identified State Wide1. Understanding the diagnosis2. How and where to obtain financial assistance3. Connecting with other young women with
breast cancer4. Addressing issues pertaining to body
image5. Finding support for family and friends
Needs Assessment Results
• Coconino County– Physical symptoms including lymphedema– Diet and exercise
• Yavapai County– Dealing with stress and anxiety– Dealing with fear of recurrence
• Santa Cruz County– Communicating with children
County Overview
• 100% diagnosed with Stage II <35 years old• 67% discovered by self breast exam
– Took between 4-6 months between detection and diagnosis
• 100% had children prior to diagnosis– All under the age of 10
• Traveled less than 10 miles (one-way) totreatment
Coconino County Overview
• All Spanish-speaking• No family history• Lower education level• 100% had children prior to diagnosis• 75% found it themselves• 100% travel >50 miles (one-way) to
treatment• 50% had private insurance
Santa Cruz County Overview
• 100% diagnosed between 26-35 years of age– All diagnosed at Stage II
• 100% had children <10 years of age• 67% had a family history
– but did NOT receive genetic testing
• 0% were working at the time of diagnosis– 67% were covered by AHCCCS
Yavapai County Overview
• Customize educational programs to address particular needs and demographics of each county and population
• Make resources more accessible and easier to navigate
THEY TOLD US THEIR NEEDS… NOW WE CAN HELP ADDRESS THEM
Our Response to These Needs
How the Initiative will address needs identified by needs assessment
PROGRAM PLAN
Young Breast Cancer Survivor (YBCS)Support Services
• Provide structured support services to YBCS• Create an online resource center• Conduct large scale educational seminars
withexperts in the areas of greatest need– Fertility expert– Child life specialist– Sexuality and relationship counselor
• Increase the proportion of cancer survivors who report physical health-related quality of life similar to the general population
• Reduce the overall cancer death rate
• Reduce the female breast cancer death rate
Healthy People 2020 Focus
Healthy People 2020 Action Plan• Establish a presence in Arizona
– Community Events– High Schools– Universities– Community Organizations
• Encourage breast health awareness
• Promote personal advocacy
• Highlight young women’s diagnosis toremember to have ‘important discussions’
• Full-focus treatment– Instead of ‘instructing’, focus on ‘discussing’– Diagnosis/Treatment effects on fertility– Discussion of long-term effects of diagnosis
• Triple-Negative: high recurrence rate• Estrogen Positive: what does taking Tamoxifen
mean?
Medical Community Action Plan
Addressing the needs of young survivors
THE WEBSITEwww.azbreastcancer.org
Arizona Breast Cancer Resource GuideCommittee (ABC)
• Groups of individuals representing manyorganizations throughout state– American Cancer Society– Arizona Department of Health
Services– Cancer Treatment Centers of
America– Desert Cancer Foundation of AZ– Bosom Buddies of Arizona– Susan G. Komen for the Cure– And many others
• Connects breast cancer survivors with credible resources
• Lessens load for patient navigators• Streamlines process for patients seeking support
services specific to their needs• Website launched August 2012
www.azbreastcancer.org
• Financial Assistance
• Support GroupInformation
• Fertility Information• Questions to ask your
Doctor
• Wigs/Prosthetics• Advocacy
Opportunities
• Coming Soon:How to talk to yourchildren about cancervideowww.azbreastcancer.org
• Clinical Trials
• Partner with us to bring educational events to your area
• Connect YBCS to our initiative to find services
• Share www.azbreastcancer.org
• Data sharing: provide data specific to your YBCS
• Share Initiative collateral so you may help address those who are in need in your area
How can we Collaborate?
Questions?
**This presentation was supported by Cooperative Agreement Number DP11- 1111 from The Centers for Disease Control and Prevention.
Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the
Centers for Disease Control and Prevention.**