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CongenitalCMV(cCMV)InitiativesAcrosstheUnitedStates:
APanelDiscussion
StephanieBrowningMcVicar,Au.D.KirstenCoverstone,Au.D.
GingerMullin,Au.D.
LearningObjectives1:DiscussCMVinitiativesoccurringacrosstheUnitedStateswithorwithoutlegislation.
LearningObjectives2:DescribesuccessfulstrategiesandbarrierstoincreasingCongenitalCMV(cCMV)awarenessand/orcCMVtesting.
LearningObjectives3:IdentifyresourcesavailableforuseinimplementingCongenitalCMVinitiatives.
StateEarlyHearingDetection&Intervention(EHDI)Coordinators
National EHDI Goals
CDC “1-3-6”:
Hearing screening before 1 monthDiagnostic evaluation before 3 monthsEarly intervention before 6 months
Congenital CMV and Hearing Loss
Congenital CMV is the most common cause of non-hereditary hearing loss in children.
In a large number of asymptomatic children with congenital CMV, hearing loss is the only sequelae (known abnormality).
TypesofcCMVInitiatives• Education- only• Screeningofchildrennotpassinguniversalnewbornhearingscreening(UNHS)
• UniversalScreening
• Legislativelymandated• Notlegislativelymandated
UTAH catalyst
Utah EHDI
26-10-10 UCA, “Cytomegalovirus (CMV) Public Education and Testing”
● UDOH establish and conduct a public education program to inform pregnant women and women who may become pregnant about CMV (incidence, transmission, birth defects, diagnostic methods, preventative measures)
● Provide information to: child care providers, school nurses, health educators, health care providers, religious organizations offering children’s programs as part of worship services
Utah EHDI
26-10-10 UCA, “Cytomegalovirus (CMV) Public Education and Testing”
If a newborn infant fails the newborn hearing screening test(s)……
Medical Practitioner shall:● Test the newborn infant for CMV before 21 days of
age…unless the parent objects; and● Provide to the parents information re: birth defects caused
by congenital CMV and available methods of treatment.
Illinois(catalyst)• Parentdrivenlegislation
• ThereisaneedforEHDIprogramstoprepareandbeatthetable.(evenbeforethetableisset)
Sec.2310-685ofthislegislationrequiresbirthingfacilitiestoprovidecytomegalovirus(CMV)educationalmaterialsand newborntestingoptionstoparents,asstatedbelow:
"(f)Ifanewborninfantfailsthe2initialhearingscreeningsinthehospital,thenthehospitalperformingthatscreeningshallprovidetotheparentsofthenewborninfantinformationregarding:– birthdefectscausedbycongenitalCMV;– testingopportunitiesandoptionsforCMV,includingtheopportunityto
testforCMVbeforeleavingthehospital;and– earlyinterventionservices.
HealthcareprovidersmayusethematerialsdevelopedbytheDepartmentfordistributiontoparentsofnewborninfants."
ILLINOISPublicAct099-0424
IllinoisCytomegalovirus(CMV)legislation
CMVEducationLegislation- effectiveJan2016▪ Iftestingiselected, itmustbecompletedby21days
ofageafteraninfantrefersontheirsecondhearingscreening
Goals▪ ToreducedisabilitiesassociatedwithcongenitalCMVby:▪ Raisingawarenessofwomenwhomaybecomepregnant;expectantandnewparents
▪ Educatinghealthcareproviderswhocare forexpectantmothersofinfants
MinnesotacCMVInitiative• Catalyst
– InfectiousDiseasespecialist,Dr.MarkSchleiss• additionalresearch/studiesonCMV&pastcollaborationwithMDH
– KirstenCoverstone,NewbornScreeningEHDIcoordinator• LongstandinginterestandcommitmenttoCMVasauniversalnewbornscreeningcondition
– 2014CMVconference,SaltLakeCity,Utah• MNNewbornscreeningprogramkeystaffattended
– MDHasEIPgrantrecipientfromCDC–• RecentadditionincludedaCMVprojectopportunity
MNCCMVStudy- Collaboration• ScopeofCMVwork
– Year1- Universaltesting(consented)• Methodologyandsamplecomparisons• ‘Justintime’FactSheetdevelopment(Parent/Provider)
– Year2– Expansiontoadditionalsite/s&initiationofgeneralpopulationeducationefforts
– Year3– develop/modifyguidelinesforcCMVscreening• LeadsforMN‘Universal’cCMVProject
– CDC– SheilaDollard,PhD– MDH– MaggieDreon,MS,CGC– UMN– MarkSchleiss,MD
• Fundingsource– CDCEPIgrant&newbornscreeningstaff‘inkind’
MNCCMVStudyPrimaryobjective:
Aredriedbloodspots(DBS)sufficientfordetectingcCMV?• CHIMESstudy- lowdetectionratesforcCMVonDBS
comparedtosaliva.• Salivauniversalscreeningwouldrequirestatesto
developnewmethodsforcollection. (costly&timeintensive)• Technologyhascontinuedtodevelop&detectionrates
forDBSsarebelievedtohaveimprovedtoacceptablerates.
• 30,000enrolleesareneededtoanswerthisquestion
MNCCMVStudy
Secondaryobjectives:DoparentsfinduniversalscreeningforcCMVacceptable?• Determinedbypercentageofparentswhoelectto
enroll.WhatistheparentalexperiencewhenachildisidentifiedtobepositiveforcCMVbynewbornscreening?• Assessparentalexperiencepost-diagnosis.
Funding
Wheredoesitcomefrom?
Isthereany?
DataCollectionConsiderations
• Whatinformationshouldbecollected?• Wherewillinformationbedocumented?• Isreportingmandatory?• Whoisgoingto“chase”thedata?
DataCollectionsthroughtheEHDIsystem
KEYPARTNERS
AreFamiliesKeptattheCenter?
Howdoesinfectiousdiseasedepartmentsgetinvolved?
Challenges
• Professionalconcern– Notallcolleaguessupportthisconditionbeingconsideredforuniversalscreeningatthistime
Whattypeoftestingisbest?Canthestatedictatethetypeoftestingdone?
CMV 101 http://www.infanthearing.org/resources_home/events/cmv-webinar-aug-2014.html
Staffing?
• Developmentofmaterials• Educationofhospitals,physicianandparents• Datacollection(atthestateandhospitallevel)
• Labtesting(inhouse/outsourced)• Follow-up
Howdowefitinsomethingnew?
Considerations
• IL– addressingthe21daytimeframewhenhearingscreeningcannotbecompletedpriorto21days
• IL– define“secondscreening”isthesecondscreeningpriortoorafterdischarge
•IL- willhospitalsscreenforCMVevenwhennotmandated
R398-4-3. Clarification of when a newborn fails a hearing screen.
The newborn must fail both hearing screens, the initialhearing screen routinely done at birth and the subsequentfollow-up screen
or if/when the initial failed hearing screen is obtainedafter 14 days of age before the medical practitioner isrequired to test for CMV.
R398-4-4. Special populations of newborns.
In special populations of newborns where newborn hearing screening(s) cannot be accomplished prior to 21 days of age, testing for CMV is left to the discretion of the medical practitioner(s) caring for the newborn.
Special population of newborns may include, but not limited to, premature or medically fragile newborns or newborns receiving on-going medical care.
ACCOMPLISHMENTS
• Screeningpriortodischarge
• Brochures
• Hospitalnotification
• Hospitalengagement
Accomplishments• Collaborationamongmultiplestakeholders• Increasingenrollment&#oflocations• Educationalinformationdeveloped:
– CMV101formedicalprofessionals/colleagues– CMVpositivefactsheets(Justintimeinformation)
• ParentsandProviders
Accomplishments
76%ofthoseapproachedchoosetoenroll• MajorityareacceptingofcCMVscreening
1Positive– asymptomatic,passedhearingscreening• Audiologicalmonitoring
● WearebeginningtoanswersomeofthequestionsraisedaboutcCMVuniversalscreening.
Accomplishments● HelpStopCMVUtahlogo
● Acomprehensivewebsite:health.utah.gov/CMV◦ Brochures(InSpanishandEnglish):“CMV:WhatWomenNeedtoKnow”,“CongenitalCMVand
HearingLoss”,“CMV:WhatChildcareProvidersNeedtoKnow”,“NewbornHearingScreening:WhatYouNeedtoKnowBeforeYouHaveYourBaby”,“CMVUtahTwo-SidedFlyer”
◦ CareDocuments:“CMVCoreFacts”,“CMVforPediatricCareProviders”,“CMVforObstetricalHealthCareProviders”,“CMVPCRTestinginUtahLabs”
◦ Posters:“CMVDuringPregnancyCanHarmYourBaby”– differentorientations,messagesandsizes◦ CongenitalCMVTestingReferencePosters:“CMVTestingInformationforHospitals”,“CMVTesting
InformationforMidwives”,“CMVTestingInformationforProviders”,“CMVTestingInformationforLabs”
◦ CMVTestingInformationforProviders(lettertogowithCMVTestingFaxForm)◦ CMVTestingInformationforParents(tohandattimeoftestingeligibility)◦ CMVandNBHSStatusFAXFrom◦ CMV,NBHS,PCPFlowchart◦ CMVMaterialsOrderForm◦ CMVAwarenessPromotionalMaterials(InSpanishandEnglish):HandSanitizerswithInformational
Leafletattached,LipBalms,Toothbrushes– allwithCMVAwarenessMessages,“AskMeAboutCMV”buttons&accompanyingcampaign
Accomplishments(Continued)● OnlinetrainingmoduleforChildCareProviders● OnlinetrainingmoduleforPhysicians(inprocess)● CMVMini-Documentary● CMVPublicServiceAnnouncements(30sec,1min,3mins)● CMVUtahFacebookpageandTwitterAccount– activesocialmedia
campaigns@CMVUtah● CMVAwarenessFocusGroups● CMVonlinetrainingwebinars● CMVbaselineknowledgesurveys● TablesatHealthFairs● GrandRoundsPresentations● Local,stateandnationalpresentations● Many,many,manyin-personpresentations● Transit(bus/train)awarenesscampaigns● Billboards● SportsPrograms,etc.
Advice• Patience• Beatthetable• Partnerships&collaboration• Trytounderstandany
opposition/concerns– learnwhatelementsyouneedtoaddresstogainsupport
• Learnfromotherstates- reachout• Rememberchallenges&obstaclescan
beovercome
•Thinkoutsidethebox•Utilizestudentprojectstoincreasehelpwithyourinitiative•Createasmanypartnershipsasyoucan
•Assembleamedical/scientificadvisorypanel
•Litreview,litreview,litreview– signupforalertsfornewresearch•Ifatallpossible,tryforuniversaltesting!•Haveadatabasesystemalreadycreatedbeforeyourinitiativestarts
•Haveacentralized,coordinatedtestingandreportingmechanism– directreportingfromthelab/sisbest!
•HaveadedicatedpersonforCMVandaCMVdatacoordinatorfromthestart•Justkeepswimminganddoyourbesteveninadversarialcircumstances
•Allofyourhardworkandeffortswillliterallybesavinglives•Youcandoit!!!!!
• Getinvolvedearlyon
• Educateyourself&informyourdepartmentaboutCMV
• Beproactive
[email protected]@illinois.gov
RESOURCESNationalResources&HelpfulInformation▪ AmericanFamilyPhysician:https://www.aafp.org/afp/2003/0201/p526.html
▪ HealthyChildren,AmericanAcademyofPediatrics:https://www.healthychildren.org/English/health-issues/conditions/infections/Pages/Cytomegalovirus-CMV-Infections.aspx
▪ CentersforDiseaseControl&Prevention:http://www.cdc.gov/cmv/congenital-infection.html
▪ NationalCMVFoundationInformationhttp://www.nationalcmv.org/