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P r esenter : Paula Miller

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?

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P r esenter : Paula Miller

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  1. Presenter: Paula Miller

  2. Overview • Who is the initiative team? • Whatare thefactsofYoungWomenandbreast cancer inArizona? • Whatneedswereidentified inyoungbreast cancer survivorsin Arizona? • Where dopatientsaccessresources andfinancialassistance in Arizona? • What is theArizonaBreastCancer ResourceGuide?

  3. WhoistheArizonaYoungBreast CancerSurvivorSupportInitiativeteam? MEET THETEAM

  4. Mikala Edwards, MPA, CTRS • Project Manager • Diagnosedwithbreastcancerat age25 • Advocatefor breast cancerawarenessamong • young women • MPA in Healthcare Administration • CertifiedRecreationalTherapist • Member-ArizonaComprehensive Cancer Control Program,Quality of Life Workgroup • State Leader -YoungSurvivalCoalition

  5. Whatare the facts of YoungWomenandbreastcancerin Arizona? STATE CANCERFACTS

  6. 2009StateBreast Cancer Statistics • 213womendiagnosedbetweenages 0-39 years • 54.5% ofcases were early stage* • 41.8% ofcases were late stage* • 31.8% ofcases were unknownstage *EarlyStage= inSitu andLocalStage; LateStage = RegionalandDistantusingSEERSummaryStage

  7. 2009Statisticsby Race/Ethnicity 120.00% 9.00% 7.40% 5.70% 5.70% 100.00% 26.40% 80.00% 29.90% 23.40% 28.90% UnknownStage Late Stage Early Stage 60.00% 40.00% 67.90% 67.60% 64.40% 63.70% 20.00% 0.00% White Non- Hispanic WhiteHispanic American Indian Black *EarlyStage=inSitu and LocalStage;Late Stage=Regionaland Distant using SEER Summary Stage

  8. 2010StateBreast Cancer Statistics • 219womendiagnosedbetweenages 0-39 years • 42.5%ofcases were earlystage* • 48.4% ofcases were late stage* • 31.8% ofcases were unknownstage *EarlyStage= inSitu andLocalStage; LateStage = RegionalandDistantusingSEERSummaryStage

  9. 2010Statisticsby Race/Ethnicity 120.00% 11.30% 6.20% 8.40% 5.00% 100.00% 26.20% 80.00% 28.60% 37.00% 28.90% UnknownStage Late Stage Early Stage 60.00% 40.00% 67.60% 63.00% 59.80% 58.00% 20.00% 0.00% White Non- Hispanic WhiteHispanic American Indian Black *EarlyStage=inSitu and LocalStage;Late Stage=Regionaland Distant using SEER Summary Stage

  10. CooperativeAgreement with theCentersforDiseaseControland Prevention ABOUTTHEPROGRAM

  11. CDC Cooperative Agreement • Three year agreement between CDCandJohnC. • LincolnHealthFoundation • Developsupportandeducationawarenessforyoung(<45yearsofage) breastcancersurvivors, theirfamiliesandcaregivers • Developeducationalresourcestoincreasepatient • and providerknowledge • AlignwithHealthyPeople2020 • – Increasethe proportionof cancersurvivorswhoreportphysical • health-relatedqualityoflifesimilarto the generalpopulation – Reducethefemalebreastcancerdeathrate

  12. Process Overview • Identify needsofYBCSin Arizona • Establishsteeringcommitteestohelp guide program • AYBCSOC • Write &distribute needsassessment-statewide • Analyzeneedsassessmentresults • Voteon top priorities • ABCCommittee • Collaborate onavailableresources • Voteon mostcredibleresources basedonreferralsand • usage •Provide input onfunctionality ofwebsite

  13. Whatneeds wereidentifiedinyoungbreastcancersurvivorsin Arizona? NEEDS ASSESSMENT

  14. ArizonaYoung BreastCancer Survivor OutreachCoalition(AYBCSOC) • Purpose: Identify topprioritiesofYBCS • Composedofyoungsurvivors, medical community, andcommunity partners • Provide adviceandsupport for theneeds • assessment • Selecttop5 priorities basedondatacollected fromneedsassessment • Recommendationsfor implementationofproject • plan

  15. Identifying Top Priorities • AYBCSOC • presentedwith a ‘needs’reportincluding: • Medical,Daily,Emotional,andRelationshipNeeds • Narrowedneedstotop 11,basedonresponsesby • assessmentparticipants • Formal,anonymous,onlinevote identifiedtop5 priorities

  16. Needs Assessment Results • TopFive NeedsIdentifiedState Wide • Understandingthediagnosis • Howandwhere toobtainfinancialassistance • Connectingwithotheryoungwomenwith breastcancer • Addressingissuespertainingtobodyimage • Findingsupportforfamilyandfriends

  17. County Overview • Coconino County • Physicalsymptomsincludinglymphedema • Dietandexercise • Yavapai County • Dealingwithstressandanxiety • Dealing withfear ofrecurrence • Santa CruzCounty • Communicatingwith children

  18. Coconino County Overview • 100% diagnosedwithStage II<35yearsold • 67% discoveredby selfbreast exam • Took between 4-6monthsbetween detectionand diagnosis • 100% hadchildren prior todiagnosis • All undertheage of10 • Traveledlessthan10 miles (one-way) to • treatment

  19. Santa Cruz County Overview • All Spanish-speaking • No familyhistory • Lowereducationlevel • 100% hadchildren prior todiagnosis • 75% founditthemselves • 100% travel >50miles (one-way)totreatment • 50% hadprivateinsurance

  20. Yavapai County Overview • 100% diagnosedbetween26-35yearsofage • All diagnosedat Stage II • 100% hadchildren <10years ofage • 67% hada familyhistory • butdidNOTreceive genetic testing • 0% wereworking at the timeofdiagnosis • 67%were coveredbyAHCCCS

  21. Our Response to These Needs • Customizeeducationalprogramsto address particularneeds anddemographicsof each county andpopulation • Make resourcesmoreaccessibleandeasierto navigate • THEYTOLDUS THEIR NEEDS… • NOWWE CANHELP ADDRESSTHEM

  22. HowtheInitiative willaddressneeds identifiedbyneeds assessment PROGRAMPLAN

  23. Young BreastCancer Survivor(YBCS) SupportServices • Providestructured supportservicestoYBCS • Createanonlineresourcecenter • Conductlarge scaleeducational seminarswith • expertsin the areasofgreatestneed • Fertilityexpert • Childlife specialist • Sexualityandrelationshipcounselor

  24. Healthy People 2020 Focus • Increasetheproportionofcancersurvivors whoreportphysical health-related qualityof life similartothe generalpopulation • Reduce the overall cancerdeathrate • Reducethefemale breastcancerdeath rate

  25. Healthy People2020Action Plan • Establisha presencein Arizona • CommunityEvents • HighSchools • Universities • CommunityOrganizations • Encouragebreast healthawareness • Promotepersonaladvocacy

  26. Medical Community Action Plan • Highlightyoung women’sdiagnosisto • remembertohave ‘importantdiscussions’ • Full-focustreatment • Insteadof‘instructing’,focuson‘discussing’ • Diagnosis/Treatmenteffects onfertility • Discussionoflong-termeffects ofdiagnosis • Triple-Negative:highrecurrencerate • EstrogenPositive:whatdoestakingTamoxifenmean?

  27. Addressingtheneedsofyoungsurvivors THEWEBSITE www.azbreastcancer.org

  28. ArizonaBreastCancer Resource Guide Committee (ABC) • Groups ofindividualsrepresentingmany • organizationsthroughoutstate • AmericanCancerSociety • ArizonaDepartmentofHealth Services • Cancer TreatmentCentersof America • DesertCancer FoundationofAZ • BosomBuddiesofArizona • SusanG.KomenfortheCure • Andmany others

  29. Connectsbreastcancer survivorswithcredibleresources • Lessensloadforpatientnavigators • Streamlinesprocessforpatientsseekingsupport • servicesspecifictotheirneeds • WebsitelaunchedAugust2012 • www.azbreastcancer.org

  30. Financial Assistance • Wigs/Prosthetics • Advocacy Opportunities • SupportGroup • Information • Clinical Trials • FertilityInformation • Coming Soon: • Howtotalkto your • childrenaboutcancer • video • www.azbreastcancer.org • Questionsto ask your • Doctor

  31. How can we Collaborate? • Partnerwith ustobring educationaleventstoyourarea • Connect YBCStoourinitiativetofindservices • Sharewww.azbreastcancer.org • Datasharing:provide dataspecifictoyourYBCS • Share Initiativecollateralsoyoumay helpaddressthosewhoare in needin yourarea

  32. Questions? **Thispresentationwas supportedbyCooperative Agreement NumberDP11- 1111from The CentersforDiseaseControlandPrevention. Its contents are solely the responsibility ofthe authorsanddonotnecessarilyrepresentthe officialviewsofthe CentersforDiseaseControlandPrevention.**

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