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BrandiPernell,DNP,PNP-BCChristyBemrich-Stolz,MD,MSPH
UniversityofAlabamaatBirminghamDivisionofHematology/Oncology
October20,2017
TransitiontoAdultCareinPatientswithSickleCellDisease
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Objectives• Children’sSickleYouthNetwork(CYSN™)
• Pathophysiology ofsicklecelldisease
• Commoncomplicationsaffectingadolescentsandyoungadultswithsicklecelldisease
• CoreElementsofTransition
• FindingsfromaqualitativestudyonSCDtransition
• Multidisciplinaryrolesintransitioninsicklecelldisease
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Objectives• Children’sSickleYouthNetwork(CYSN™)
• Pathophysiology ofsicklecelldisease
• Commoncomplicationsaffectingadolescentsandyoungadultswithsicklecelldisease
• CoreElementsofTransition
• FindingsfromaqualitativestudyonSCDtransition
• Multidisciplinaryrolesintransitioninsicklecelldisease
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SicklecellinAlabama
• Mostcommonhemoglobinopathy inAL– 1/12AfricanAmericanswithsicklecelltrait– 1/350AfricanAmericansarebornwithSCD
• Screeningdonebyhighperformanceliquidchromatography(HPLC)onheelstick
• Hemoglobinopathy screeningstartedin1988
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Children’sSickleYouthNetwork(CYSN™)
• Multidisciplinaryteam:hematologists,nursepractitioners,nurses,socialworkers,psychologist,schoolliaison
• Providescareformorethan1000patientswithsicklecelldisease(SCD)inAlabama
• Manages>80patients/monthonchronictransfusion
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Children’sSickleYouthNetwork(CYSN™)CatchmentArea
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Children’sSickleYouthNetwork(CYSN™)StandardsofCare
• Infectioncontrol(prophylacticpenicillin)• Annualscreeningforriskofstroke(transcranialdoppler)
• Patient/familyeducation• Hydroxyureatherapy• Chronicbloodtransfusiontherapy(UAB)• Screeningforcommoncomorbidities:asthma,kidneydisease
• Transitionreadiness
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Objectives• Children’sSickleYouthNetwork(CYSN™)
• Pathophysiology ofsicklecelldisease
• Commoncomplicationsaffectingadolescentsandyoungadultswithsicklecelldisease
• CoreElementsofTransition
• FindingsfromaqualitativestudyonSCDtransition
• Multidisciplinaryrolesintransitioninsicklecelldisease
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WhatisSickleCellDisease?
• Anautosomal recessiveredbloodcelldisorder
• PrimarilyaffectsindividualsofAfricandescent
• Characterizedby:o earlyredbloodcellhemolysis - ->anemiao widespreadinflammationo recurrentepisodesofpaino riskforinfectionandend-organdamage
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Pathophysiology ofSCD
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CommonSCDcomplications
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MortalityinSCD• 1973autopsyreview:estimatedmediansurvivalof14.3y• CooperativeStudyofSicklecelldisease(CSSCD)1979-87
(Leikin),deathratehighestin1-3yo,probabilityoflivingpast20yo85-95%
• PlattCSSCDfollowupin1994:medianageofdeath42yformale,48yforfemale
• Lanzkron(2013):improvedmortalityinchildrenwithSCDwithincreasingmortalityinadults1979-2005
DiggsLM,AnatomiclessonsinsicklecelldiseaseinSicklecellidsease:diagnosis,management,educationandresearch1973Leikin SLetalMortalityinchildrenandadolescentswithsicklecelldiseasePediatrics1989PlattetalMortalityinsicklecelldisease:-Lifeexpectancyandriskfactorsforearlydeath.NEJM1994Lanzkron MortalityratesandageatdeathfromsicklecelldiseaseUS1979-2005Publichealthrep2013
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Objectives• Children’sSickleYouthNetwork(CYSN™)
• Pathophysiology ofsicklecelldisease
• Commoncomplicationsaffectingadolescentsandyoungadultswithsicklecelldisease
• CoreElementsofTransition
• FindingsfromaqualitativestudyonSCDtransition
• Multidisciplinaryrolesintransitioninsicklecelldisease
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MostcommoncomplicationsaffectingadolescentsandyoungadultswithSCD
• Stroke• Ironoverload• Chroniclungdisease• Pulmonaryhypertension• Chronickidneydisease• Venousthromboembolism
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Potentialimpactofastrokeduringearlyadulthood
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Objectives• Children’sSickleYouthNetwork(CYSN™)
• Pathophysiology ofsicklecelldisease
• Commoncomplicationsaffectingadolescentsandyoungadultswithsicklecelldisease
• CoreElementsofTransition
• FindingsfromaqualitativestudyonSCDtransition
• Multidisciplinaryrolesintransitioninsicklecelldisease
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Transition≠Transfer
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WhatisTransition?• “Purposeful,plannedmovementofadolescentswithchronicmedicalconditionsfromchild-centeredtoadult-orientedhealthcare”
• Goalofmaximizing“lifelongfunctioningandpotentialthroughtheprovisionofhigh-quality,developmentallyappropriatehealthcareservicesthatcontinueuninterruptedastheindividualmovesfromadolescencetoadulthood.”
Blum R. W. Introduction. Improving transition for adolescents with special health care needs from pediatric to adult-centered health care. Pediatrics. 2002;110(6 Pt 2):1301-1303.A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 Pt 2):1304-1306.
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WhyistransitionimportantinSCD?
• 93%ofchildrenwithsicklecelldiseasewilllive18yearsold
• Increasedmorbidity
• Increasedriskforprematuremortality
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ImbalancebetweennumberofadultsprovidersandnumberofadultswithSCD
AdultprovidersforSCD(Primarycare,Hematologists)AdultswithSCD
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WhyistransitionimportantinSCD?• 2012Dickerson:Youngadultswithsicklecellanemiahave:– TwicethenumberofERvisitsandinpatientstaysperyearthanthose10-17yoor31-45yo
– Highestpercentageoffrequentacutecarevisits(>10visitsperyear)andreturntoacutecarewithin14days
• 2010Quinn:WithinDallasNewborncohort,mostdeaths(6/7)inpatients18-23yooccurredwithin2yearsoftransitiontoadultcare.
Dickerson A. K., Klima J., Rhodes M. M., O'Brien S. H. Young adults with SCD in US children's hospitals: Are they different from adolescents? Pediatr Blood Cancer. 2012.Quinn C. T., Rogers Z. R., McCavit T. L., Buchanan G. R. Improved survival of children and adolescents with sickle cell disease. Blood. 2010;115(17):3447-3452.
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WhyistransitionimportantinSCD?
• Hamideh 2013:“Mortalityratesinpatientswithsicklecelldiseaseincreasedfrom0.6inthe15-19yeargroupto1.4/100,000inthe20-24yeargroup”
• Blinder2013:“Patientstransitioningto adult care receivedlesstransfusionsandhydroxyurea,lessironchelationtherapy,hadhigherhealthcarecostsandsufferedfrommorefrequentSCDrelatedcomplicationsthanpediatricpatients.”
Hamideh. Sickle cell disease related mortality in the US 1999-2009 PBC 2013Blinder. Age related treatment patterns in sickle cell disease patients and the associated sickle cell complications and healthcare costs. PBC 2013
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SCDQualityGuidelines(Wang2011)
AdolescentswithSCD:• Shouldhavea“transitionplantoadultcareincludingawrittentransfersummaryofmedicalhistory”
• Shouldreceivecounselingregardingthetransitionprocess
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HealthPeople2020Goal(Dept.ofHealthandHumanServices)
Increasetheproportionofyouthwithspecialhealthcareneedswho’shealthcareproviderhasdiscussedtransitionplanningfrompediatrictoadultcare
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GotTransition
• AgreementbetweentheMaternalChildHealthBureauandthenationalalliancetoadvanceadolescenthealth
• Advocatesforsixcoreelementsofhealthcaretransition
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Sixcoreelementsoftransition1. Transitionpolicy
– Developpolicy– Educatestaffonapproach– Postpolicyanddiscusswithyouthandfamilies
2. Transitiontrackingandmonitoring– Developdatabaseandusetotrackprogressofpatients
3. Transitionreadiness– Conducttransitionreadinessassessmentsbeginningatage14
– Developgoalsandactionsanddocument
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TransitionReadinessAssessmenttemplateforSCD-DISEASEKNOWLEDGE
AmericanSocietyofHematology
IknowwhattypeofsicklecelldiseaseIhave.Iknowmymedicalneedsandcanexplainthemtosomeone.IknowwhatahematologistisandwhyIgotoone.Iknowwhattodoincaseofamedicalemergency.Iunderstandwhatcausesapainepisode.Iunderstandhowdrugs,alcoholandtobaccoaffectsicklecelldisease.IhavefriendsthatIcantalktoaboutsicklecelldisease.Iknowaboutnecessaryscreeningexams(echoannually,kidneyfunctionannually,retinalexams,etc.).Iknowhowtogetbloodworkandx-rays.
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Iknowwhatmymedicationsarefor.Iknowthenamesanddosesofmymedications.Iremembertotakemymedicationswithoutmyparentremindingme.IfillprescriptionsbeforeIrunoutofmedications.Iamawareofwhathydroxyureaisandhowitpreventssicklingofmyredbloodcells.IknowhowtopreventapainepisodeandwhattodoifIhavepain.
TransitionReadinessAssessmenttemplateforSCD-MEDICATIONMANAGEMENT
AmericanSocietyofHematology
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Imakemyowndoctors’appointments.Iknowhowtogetmedicalcarewhenthedoctor’sofficeisclosed.IfilloutmyownmedicalhistoryformIkeeptrackofmyownmedicalinformation.Ikeeptrackofmydoctors’andotherappointments.Imakealistofquestionsbeforemyvisitwithmydoctors.Ianswerquestionsonmyownduringmedicalvisits.Iarrangemyowntransportationtomedicalappointments.
TransitionReadinessAssessmenttemplateforSCD-APPOINTMENTS
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Icarrymyowninsurancecard.Iunderstandmyinsuranceplan.
TransitionReadinessAssessmenttemplateforSCD
INSURANCE
PRIVACYINFORMATIONIunderstandhowhealthcareprivacychangesatage18,whenIamlegallyanadult.
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Sixcoreelementsoftransition
4.Transitionplanning• Developandupdateplanofcare• Prepareforadultapproachtocareat18yoincludinglegalchanges
• Determineneedfordecisionmakingsupport• Planwithpatient/parenttimingoftransfer• Assistyouthinidentifyingadultprovider• Provideinsuranceandselfcareresources
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Sixcoreelementsoftransition
5.Transferofcare� Confirmdateoffirstadultprovidercontact� Transferwhenpatient’sconditionisstable� Completetransferpackage� Continuetoseeinpediatricsettinguntilyoungadultisseenintheadultsetting
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Sixcoreelementsoftransition
6.Transfercompletion� Contactyoungadult3-6mpost-transfertoconfirmtransferandobtainfeedback
� Communicatewithadultpracticeandofferconsultationassistanceasneeded
� Buildcollaborativepartnershipswithadultprimaryandspecialtycareproviders
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Objectives• Children’sSickleYouthNetwork(CYSN™)
• Pathophysiology ofsicklecelldisease
• Commoncomplicationsaffectingadolescentsandyoungadultswithsicklecelldisease
• CoreElementsofTransition
• FindingsfromaqualitativestudyonSCDtransition
• Multidisciplinaryrolesintransitioninsicklecelldisease
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EXPLORINGADULTCAREEXPERIENCESANDBARRIERSTOTRANSITIONINADULTPATIENTSWITHSICKLECELLDISEASE
Bemrich-stolz CJ,Halanych JH,HowardTH,HilliardLM,LebensburgerJD.ExploringAdultCareExperiencesandBarrierstoTransitioninAdultPatientswithSickleCellDisease.Int JHematol Ther.2015;1(1)
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StudyMethodology
• Patients>18yofromUABsicklecellclinic(nolimitongenotype)
• Semi-structuredinterviews– Timingandpreparationfortransfer– Developmentofindependence– Feelingsaboutandexperiencesinpediatricandadultcare
• ReviewandcodingoftranscriptsbyCBandJL
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Patientdemographics
• 10participants• 24-55yo• Allpatientshadinsurance• 9/10ondisability• 9/10HSgraduates
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Pre-transitionconcernsLeavingcomfortablepediatricsetting[10,11,14,15]
Goingtoadoctorunfamiliarwithtreatingsicklecell
disease[11]
Willmyparentsallowpatientstobecome
independent[11,15]
HowwillIpayformedicaltreatment[10]
WillIbetreatedasanadult[10]Willadultprovidersunderstandhowsicklecelldiseaseaffectsmeasanindividual[10,14]
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LivingwithSCDasanadult
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LivingwithSCDasanAdult–ThemesIdentified
� Physicianmistrusto “Treatmelikeyouwouldwantsomeonetotreatyou.Don’t
groupmeinacategoryofotherSCDpatients.”o “Dr.Xismyprimarydoctorbuthedoesn’treallyknowanything
aboutsicklecelldiseasesoIhavetotellhimwhattodo..”o “he(PrimaryMedicalDoctor)wasreallymeantome.Hewasa
littlebitarrogant.Itwaslikehewasblamingmeforthesoreonmyleg(legulcers).”
o “Whenyougototheemergencyroom…theythinkitsanopinionbutitsnot,itjusthurts.”
o “They…treateduslikepeopleoffthestreet.Oh,she’sjustcominginheretogetafix.Theworstthingisthattheydon’ttreatyouwithrespectandkindness.Theytreatyoulikeacrackhead becauseofwhatyouhave.”
o “Whenyougettobeanadult,theytendnottobelieveyouasmuch.”
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LivingwithSCDasanAdult–ThemesIdentified
� Employmento “Youcan’tgointheretellingthemthatyouhavethese
crisesandIhavetobeout”.o “It’sverydifficulttoholdemploymentbecauseofthe
stresslevel.”
� Relationshipsatworkandathome:o “wherehaveyoubeen,onvacation?”o “(hedidnot)understandthecycleofpainandwhatit
does.”o “IfIsay‘ohmygodmyleghurtssobad’thanhe’dsay‘well
minehurtstoo’IjustsayOKdad,butit’sadifferenttypeofhurt.”
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Patientandfamilyfears:
• Leavingthecurrentprovidero “Itwaslikesomeonepulledtherugoutunderme”
• Establishingtrustwithanewprovidero “WhowasgoingtobemydoctorandwasshegoingtobenicefromthetimewhenIcomeover?”
• Navigatinganewhealthcaresystemo “Iwasdefinitelyconcernedaboutswitchingbecausethat’sallIknew—Children’sandthedoctorsIwasseeingthere.IwasdefinitelyscaredtomoveovertoUAB”
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Conclusions
• Patientsperceivesignificantdistrustfromphysicianso InterventionstoimprovephysicianopinionsregardingptswithSCD
• ContinuedparentinvolvementoMaybeusedasatransition
• Lackofphysicianknowledgeo Improvededucationefforts
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Conclusions
• Difficultyidentifyingdoctorso Appropriatecareparadigm?
• Difficultymaintainingemploymento Furtherresearchneeded
• Questionsregardingnumbersofpatientswithsicklecello 2ptsdiagnosedasadultso 2ptswithnohealthcarecontactformanyyears
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Objectives• Children’sSickleYouthNetwork(CYSN™)
• Pathophysiology ofsicklecelldisease
• Commoncomplicationsaffectingadolescentsandyoungadultswithsicklecelldisease
• CoreElementsofTransition
• FindingsfromaqualitativestudyonSCDtransition
• Multidisciplinaryrolesintransitioninsicklecelldisease
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Factorsthatinfluencesuccessoftransitiontoadultlife
Transition
Family/Relationships
Health
Education
Vocation
Lifeskills
Self-efficacy
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TransitionProcess
<12yo• Encourageparentstoteachchildrenabouttheirdiseaseincludinggoodhealthpractices
12-14yo• Beginencouragingpatientstolearnmoreabouttheirdisease
15-18yo• Patienttransitionplanningandeducation
>18yo• Transfertoadultcare
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TransitionProcess
• Engagepatientsintheconversationregardlessofage
• Makeeveryclinicvisitaneducationalvisit• Followschoolprogresstoensurestayingatappropriategradelevel
• Encouragedreamswhilemaintainingafocusongoalswithinreach
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Selfefficacy
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Importantthingstoknow
<19yo Adulthood�Medicaideligibilitybasedonparentalincome
�Unlimitedinpatientandoutpatientvisits
�Dentalservices� Yearlyeyeexamsandeyeglassesevery2years
� Parkingisfreeorvalidatedforpatients/parentsatCOAforappointments
� COAsocialworkers/KID1willprovidetransportationassistance.
�Unlessdisabled,nolongereligibleforMedicaid
� Limitedto14combinedoutpatientandinpatientvisits
�Nodentalservices� Eyeexamsevery3years,noeyeglasses
�Nofreeparking�NoKID1ortransportationassistance
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Transitionresources
• www.gottransition.org• http://www.sickkids.ca/Good2Go/index.html• http://hctransitions.ichp.ufl.edu/hct-promo/
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Questions?