CFR.I.S.E.PROGRAMGUIDEAguidetoimplementingCFR.I.S.E.

atyourCFcenter.

CFR.I.S.E.wasdevelopedincollaborationwithamultidisciplinaryteamofCFexpertsandissponsoredbyGilead.

v.1UNBP2959 12/2016

DearColleague,

WearepleasedtosharetheCFR.I.S.E.programwithCysticFibrosis(CF)careteamsacrosstheUnitedStates.GreatstridesinCFcarehavebeenmadeoverthelast15yearsandhaveledtoasteadyincreaseinlifeexpectancyforCFpatients.1 Inaddition,thenumberofadultCFpatientsnowexceedsthenumberofpediatricpatientsintheUnitedStates.1WhilethishasbeenasignofprogressandhopeforCFhealthcareproviders,therehasbeenagrowingrecognitioninthecommunitythatweneedtodomoretoeffectivelyaddresstheissueoftransitionfrompediatrictoadultcare.2,3

CFR.I.S.E.wasdevelopedtoprovideCFcareteamswithpatientmaterialstoeducatepatientsabouttransition (theplannedmovementofpatientsfrompediatrictoadultcare)andtransfer (thepointintimeatwhichresponsibilityofcareshiftsfromapediatricCFCentertoanadultCFCenter)processesby:• Providingaflexible,modulartoolsetthatcanhelpimprovepatientproficiencyinCFskillsand

knowledgeacrossageranges(pre- andpost-transfer)• Helpingtofacilitatecommunicationbetweenpediatric& adultcareteamsandpatients&caregivers

CFR.I.S.E.wasdevelopedforpatientsages10-25,andisthefirstprogramcreatedtoaddresstransitioneducationonanationallevelforCFpatientsandcareteamsinthepre-transferandpost-transfersettings.ItwasdevelopedbasedonsuggestionsfromCFCentersacrosstheUnitedStates.WerecognizethatacrossCFCentersthereisvariabilityinresourcing,staffing,anddegreeofintegrationbetweenadultandpediatricteams.Assuch,ourgoalindevelopingthisprogramwastoprovideCFcareteamswithaflexiblesetofpatienteducationmaterialsthatcanbeimplementedinwholeorinpart,basedoneachCFCenter’sneeds.

TheguidethatfollowswillprovideyouwithsuggestionsforusingeachoftheCFR.I.S.E.programtools.

Welookforwardtohearingaboutyourexperiencesandwishyougreatsuccess.

Kindregards,

TheCFTransitionAdvisoryCouncilandGileadSciences,Inc.

1.CysticFibrosisFoundationPatientRegistry:2014AnnualDataReport.Bethesda,MD:CysticFibrosisFoundation;2014.2.FlumePA,TaylorLA,AndersonDA,GrayS,TurnerD.Transitionprogramsincysticfibrosiscenters:perceptionsofteammembers.PediatrPulmonol. 2004;37(1):4-7.3.ParkerHW.Transitionandtransferofpatientswhohavecysticfibrosistoadultcare.ClinChestMed. 2007;28(2):423-432.

CFR.I.S.E.TRANSITIONPROGRAM

TheCFTransitionAdvisoryCouncil(TAC),amultidisciplinaryteamofCFexperts,wasformedtohelpguidethedevelopmentandimplementationofCFR.I.S.E.

ThisCouncil,supportedbyGileadSciences,Inc.,iscomprisedofCFhealthcareprovidersandexpertswho:• haveparticipatedinstudiesand/orpublishedonthetopicofCFtransition• representbothadultandpediatricCFCentersofvaryinggeographies,sizes,andlevelsofintegrationbetween

pediatricandadultteams• havemanyyearsofexperienceimplementingtransitionprogramsandtransferpracticesintheirownCF

centers• representthevarietyofdisciplinesoftheCFcareteamincludingsupportpersons

Physicians• TaraBarto,MD,BaylorCollegeofMedicine(pediatric&adult)• PatrickFlume,MD,MedicalUniversityofSouthCarolina(adult)• CraigLapin,MD,ConnecticutChildren’sHospital(pediatric)• CharlesMcCaslin,MD,HelenDeVos (pediatric)• Samya Nasr, MD,CPI, UniversityofMichigan(pediatric)• H.WorthParker, MD, Dartmouth-HitchcockMedicalCenter(pediatric&adult)• Hossein Sadeghi, MD, CysticFibrosisCenter ColumbiaUniversityMedicalCenter(pediatric)• GregSawicki, MD, BostonChildren’sMedicalCenter(pediatric)• JonathanSpahr,MD,UniversityofPittsburghSchoolofMedicine(pediatric)

CenterCoordinator• DianeAcquazzino,BS,UniversityofNebraskaMedicalCenter(pediatric)

Psychologists• AlexandraQuittner,PhD, UniversityofMiami(pediatric)• KristinRiekert,PhD, JohnsHopkinsUniversity(pediatric&adult)

NursePractitioner• ElizabethBryson, MSN,PPCNP-BC,CS,NursePractitioner, AkronChildren'sHospital(pediatric&adult)

Nurse• MaryHelmers, RN,BSN, LucilePackardChildren'sHospitalatStanfordUniversity(pediatric)

SocialWorkers• AnneDaggett,MSW,LCSW, St.Luke’sCysticFibrosisCenterofIdaho(pediatric)• KeciaNelson,MSW,LCSW,UniversityofMissouriChildren'sHospital(pediatric&adult)

ChildLifeSpecialist• CarlaHart, MSEd,St.Luke’sCysticFibrosisCenterofIdaho(pediatric)

CFParent• LisaGreene,MA,CertifiedFamilyLifeEducator,CertifiedParentCoach,CertifiedPositiveDisciplineEducator

MEETTHETRANSITIONADVISORYCOUNCIL(TAC)

TheCFR.I.S.E.ProgramtoolsetwasdevelopedforpeoplewithCFandtheirsupportpersonsages10-25.

Thepatienttoolsetconsistsof:1. CFMilestonesbyAge&Stage2. CFKnowledgeAssessments3. CFResponsibilitiesChecklists4. ProgressReports5. EducationalResourceGuides

AllofthepatientmaterialsareavailableinbothEnglishandSpanish,andindigital,printoreditablePDFformat.Adetailedexplanationofeachofthetools,andtheirrecommendedimplementationcanbefoundonthefollowingpages.

TwosetsofmaterialshavebeendevelopedtohelpprepareyourCFpatientsfortransitionfrompediatrictoadultcare:onefor10-15yearoldsandanotherfor16-25yearolds.Thesetoolsetsweredevelopedsothatthecontentandreadinggradelevelaresuitableforyourpatients,butpleasekeepinmindthatagerangesareonlyestimates,andyourjudgmentshouldbeusedtodeterminewhichofthemodulesaremostappropriateforyourpatients.Programmaterialsforeachagegroupalsovaryindesignandquestionformats;ayellowkeyontheupperright-handcornerindicatesthetoolsetmostappropriatefor10-15yearolds.

CFR.I.S.E.hasbeenselectedbytheOneCFLLCasaSmartChangeQualityImprovementInitiativeandisalsoavailableasaMaintenanceofCertificationActivitybytheAmericanBoardofPediatrics.Ifyouwouldlikemoreinformationonhowtocompletethemaintenanceofcertification,pleasevisithttp://cfriseabpmoc.questionpro.com.

CFR.I.S.E.PROGRAMTOOLSET

THESETOOLSMEETTHEGUIDELINESANDSTANDARDSOFTHECFFOUNDATION’SEDUCATIONCOMMITTEE

Objective:Tointroducetheneedforagradual,purposefultransitionofresponsibilityfromsupportpersontopatientovertime.

Completedby:CFpatient,supportperson,andcareteammembersages6andolder

Completedat:CFCenter(canbeadministeredin-patientorout-patient)

Completedwhen:Whenfirstintroducingtheconceptoftransitionandtransferofresponsibilities,andwhenapatientmovesfromoneageorstagetothenext

Description:Thisguide providesatimelineofrecommendedCF-relatedmilestonesthatapersonwithCF,aparent,orasupportpersoncanworktowardasthechildgrowsup.TransferfrompediatrictoadultcareshouldbeestablishedveryearlyonasakeymilestoneinthelifeofapersonwithCF.CFcareteammembers canusetheMilestonesbyAgeandStagebrochuretointroducepatientsandtheirsupportpersonstotheconceptofgraduallytransitioningresponsibilityforself-careovertime.TheMilestonesbyAgeandStagedocumentincludesan“AtAGlance”chartofmilestoneswhichidentifieskeygoalsforknowledgeandresponsibilitiesinfourareasofCFcare:• UnderstandingCF• ManagingCFCare• TakingCFTreatments&Therapies• LivingwithCF

Themilestoneschartindicatesthelevelofresponsibilitythepatientandparentshouldbetakingduringthefollowingagesandstagesoftheirlife:• EarlySchoolAge(6-9)• LateElementary&MiddleSchool(10-12)• EarlyHighSchool(13-15)• LateHighSchool(16-18)• EarlyAdulthood(18-25)

Inadditiontotheguide,handoutshavebeendevelopedwhichfurtheroutlinetheCFcareresponsibilitiesapatientandsupportpersonshouldownineachageandstagelistedabove.

1.CFMILESTONESBYAGEANDSTAGE

Objective:To helpeachpatientidentifyopportunitiestoimproveknowledgeinimportantaspectsofCFcare(eg,medical,lifestyle,andfinancial)sothatthepatientandcareteamcanworktogethertodevelopapersonalized,focusedplan.

Completedby:CFpatientsages10-25

Completedat:CFcenter(canbeadministeredin-patientorout-patient)orathome

Completedwhen:AteveryquarterlyCFCentervisitoratthediscretionoftheCFcareteam

Description:KnowledgeAssessmentshavebeendevelopedtoidentifyopportunitiestoimprovepatientknowledgeonthefollowingtopics:GeneralCFHealth CF&School(10-15only)LungHealth&AirwayClearance EmotionalWellness(10-15only)PancreaticInsufficiency&Nutrition CF&YourBody(10-15only)Screening&Prevention CF&GrowingUp(10-15only)*Equipment&InfectionControl CFLiverDisease(16-25only)Lifestyle CF-RelatedDiabetes(16-25only)SexualHealth(16-25only) Insurance&Financial(16-25only)College&Work(16-25only) *recommendobtainingparentalconsentduetosensitivenatureofcontent

TheCFcareteamshoulddeterminetheKnowledgeAssessmentsthataremostapplicabletoeachpatient.KnowledgeAssessmentsshouldberolled-outslowly,withpatientscompletingonetotwoassessmentsateachCFclinicvisit.Itisrecommended,butnotrequired,thatovertimeallmodulesareadministeredtoeachpatient.EachmoduleshouldbecompletedbytheCFpatientindependent of aparentorCFcareteammembertogetatruegaugeofspecifictopicareasinwhichpatientknowledgecanbeimproved.

OnceamoduleiscompletedbytheCFpatient,thememberoftheCFcareteamresponsibleforeducationonthisparticulartopic shoulddevelopaplantohelpremediatetheeducationgapsidentifiedintheassessment.Eachmoduleshouldbere-administeredtothepatientatthenextclinicvisitorbetween6and12monthslatertomeasureprogressovertime.

IfyourcenterisnotusingCFRISE.com,usetheanswerkeytogradethescoresandthentrackthemovertimeontheProgressReport. AnswerkeysfortheKnowledgeAssessmentscanbefoundinyourProgramBinderintheKnowledgeAssessmentstab.TheTACrecommendsthatyouconsideranalternativetoprovidingnumericalscorestopatientsinthe10-15yearoldagegroup.Scalessuchas‘Gold,SilverandBronze’or‘stars’areafewrecommendedalternativestonumericalgrades.

2.CFKNOWLEDGEASSESSMENTS

ScoringGuidance.Ifapatienttakesmorethanoneassessmentpervisit,youmayconsidertriagingeducationintohigh,mediumandlowprioritybasedonthehighestareasofneedandwhattheclinician,parentandpatientfeelarethemostimportanttopicstoaddress.

3.CFRESPONSIBILITIESCHECKLISTS

Objective:To helpeachpatienttodevelopage-appropriate,self-careskillsbyworkingwiththeirsupportpersonandCFcareteamtoassessandmonitortheircurrentlevelofresponsibility.

Completedby:CFpatientsages10-25andtheirsupportperson(s)

Completedat:CFcenter(canbeadministeredin-patientorout-patient)orathome

Completedwhen:AnnuallyoratthediscretionoftheCFcareteam

Description:ThesechecklistshavebeendevelopedtoassessthedegreetowhichapatienthastakenownershipofhisorherCFcareinthefollowingareas:ResponsibilityforCFTreatments CFTransfer(16-25only)LivingwithCysticFibrosis Education&CareerPlanning(16-25only)CF&School(10-15only) Insurance&FinancialPlanning(16-25only)WorkingwiththeCFCareTeamandOtherHealthcareProfessionals

Usinga1to5scalethathasbeendevelopedtoassessthedegreeofpatientresponsibilityforaspecifichealthcareaction,thesechecklistsshouldbecompletedannuallybythepatientand theparent/supportperson inordertogetanaccurateassessmentofwhatishappeningbothinsideandoutsidetheCFcenter.

Oncethechecklistsarefilledout,thememberoftheCFcareteamresponsibleforhelpingtoimprovepatientskillsinthisareashouldcomparetheanswersoftheCFPatientvs.theSupportPersontoevaluatethepatient’s“true”levelofresponsibility.Afteragroupdiscussiontoreviewanydiscrepanciesintheresponses,specificandactionabletransitiongoalsshouldbesetoverthecourseofthecomingyeartofacilitatethetransferofage-appropriateself-careskillstothepatient.IfyourcenterisnotusingCFRISE.com,scoresfromtheCFPatient’schecklistshouldbetrackedontheProgressReporttomeasureprogressovertime.

Whenassessingtheappropriatelevelofresponsibilityapatientshouldhave,itisimportanttokeepinmindthateachpatientisunique.ItisimportantthatteenandadultpatientsbuildstrongsupportteamstohelpmanagethecomplexitiesofCF.Thistoolisanobjectivemeasurethatcanbeusedtodetermineaperson’sreadinessfortransition.Overtime,patientsshouldtakeincreasinglymoreresponsibilityfortheircare.Thosenotmakingprogressmayrequiremorefocusedintervention(counseling,additionaleducation,hands-onskilltraining,and/orproblemsolving).

ScoringGuidance.Skilllevelsmayvaryamongpatients.RefertotheMilestonesbyAgeandStagetool,butuseyourjudgmenttodecidethelevelofprogressapatientshouldmakeeachyear.Keepinmindthatinordertoachieve“independence,”mostpatientsshouldbe“completely”or“primarily”responsibleformosthealthcareactions.

4.PROGRESSREPORTS

Objective:To helpeachpatienttrackimprovementsinCFknowledgeandresponsibilitiesovertime,anddevelopfocusedandactionabletransitiongoalsforCFpatientsateachvisit.

Completedby:CFpatientsages10-25andcareteammembers

Completedat:CFcenter(canbeadministeredin-patientorout-patient)

Completedwhen:AteveryquarterlyCFCentervisitoratthediscretionoftheCFcareteam

Description:TheCFhealthcareprovidershouldfillouttheProgressReportateveryvisit.Thedocumentincludesspacefor:• ResultsfromtheCFKnowledgeAssessmentsand/ortheCFResponsibilitiesChecklisttakenduringthemost

recentclinicvisit• Specificandactionabletransitiongoal(s)basedonknowledgeandskilldeficitsidentifiedintheseassessments

andthedatethatthesegoalswereassigned• Thepatientandhealthcareprovidertoinitialtheir“agreement”toworkonthetransitiongoal• Aboxforthehealthcareproviderto“check”onceatransitiongoalhasbeencompleted

TheTransitionAdvisoryCouncilrecommendsthatacopyoftheProgressReportbekeptinthepatientchartandupdatedateachvisit.AcopyoftheProgressReportshouldgohomewiththepatienttoserveasareminderofthespecifictransitiongoalsthattheyhaveagreedtocompleteinadvanceofthenextCFCentervisit.

Transitiongoalsshouldanswerthequestionswho,what,where,why,andwhen.Forexample,apatientwhoisgoingawaytocollegeinthecomingyearandhaslittleexperiencewithmanaginghismedicationsmighthavethefollowingtransitiongoals:• Callandrefillyournextinhaledantibioticprescriptiontwoweeksbeforeyouareduetostartyournext

treatment(mm/dd/20xx)toensurethatyoureceiveyourmedicationinadvanceofyour“start”datesoyoudon’tmissadose.

• Calltheinsurancecompanytoconfirmthenewtreatmentthatthedoctorprescribediscoveredontheformularyplanandhasamanageableout-of-pocketexpense.Remembertohaveyourinsurancecardandpolicynumberavailableduringthecall.

Whensettingtransitiongoals,besuretosetgoalsthatare:• Age-appropriate• Specific• Measurable

5.EDUCATIONALRESOURCEGUIDES

Objective:To helpeachpatientandcareteammemberaccesscredibleeducationalresourcestohelpovercomeknowledgegapsidentifiedintheCFKnowledgeAssessments.

Completedby:CFpatientsages10-25andcareteammembers

Completedat:CFCenter(canbeadministeredin-patientorout-patient)orathome

Completedwhen:WhenremediatingKnowledgeAssessmentsandlookingforrelatededucationalresources

Description:Resourceguideshavebeendevelopedforboth10-15yearoldsand16-25yearolds.ThehyperlinkedPDFdocumentismeanttobeateachingtoolthatCFcareteamscanusewhenconductingremediationwithpatients.Attheendoftheguide,you’llfindaQuick-ReferenceIndextohelpyouidentifyresourcestosupportspecificquestionsontheCFKnowledgeAssessments.Asknowledgeandskillgapsareidentified,CFcareteamsareencouragedtoprintoutand/ore-maillinkstopatientstohelpwiththeeducationprocess.

TheEducationalResourceGuideisnotcomprehensiveandismeanttosupplement- notreplace- educationalresourcesthatyoualreadyuse.ThematerialsincludedintheEducationalResourceGuideareallsourcedfromtheCysticFibrosisFoundation,accreditedCFCenters,andscientificpublicationsandjournals.GileadSciences,Inc.doesnotsupport,endorse,orcontrolthecontentofthethirdpartywebsitesincludedinthisEducationalResourceGuide

AnumberoftoolshavebeendevelopedtosupportyourdiscussionsontransitionandtheCFR.I.S.E.programwithyourpatientsandtheirfamilies.Abriefdescriptionandthelocationofeachofthetoolsisprovidedbelow.

OngoingCareTeamSupport&FeedbackOurgoalistoprovideyouandyourteamwithcontinuoussupportasyoumoveforwardwithimplementingCFR.I.S.E.atyourcenter.Weencourageyoutousethefollowingresourcestoovercomeanyobstaclesthatyouencounterandtoensurethatyouhaveaccesstothelatestprogramupdates.

SUPPORTTOOLS&RESOURCES

Tool Description Location

IntroductoryLetter TemplatethatcanbesenttopatientsandtheirsupportpersonstoinformthemaboutCFR.I.S.E. Appendix B&CFRISE.com

InvitationEmail EmailinvitingthemtoregisteronCFRISE.com CFRISE.com

FamilyDayPresentation

PowerPointSlidesprovidinganoverviewoftheCFR.I.S.E.programforuseatyourFamilyEducationday CFRISE.com

PatientBrochure AbriefoverviewoftheCFR.I.S.E.program Support@cfrise.com

TransitionTearSheet

ProvidesdiscussionpointsontheimportanceoftransitionandanoverviewofhowCFR.I.S.E.works Support@cfrise.com

Resource Description Timing/Frequency

SupportEmail

Programimplementationandtechnicalsupportisavailableviaemail.Requestsarerespondedtowithin24-48hours.Emailsupport@cfrise.com

24-48hrresponse

CoachingCalls

30-minutecollaborativeworkingsessiontoidentifyimplementationbarriers,discussbestpractices,andshareprogramupdates/casestudies

Monthly

eFlashEmailNewsletter

Includesnoteworthyupdates,casestudies,andprogram-relatedFAQs Quarterly

FeedbackSurvey

Annualsurveyallowsyoutoprovidefeedbackabouttheprograminanefforttoimprovetoolsandtraining Annual

DigitalPortalStarterGuide

TheDigitalPortalStarterGuideprovidessimpleinstructionsonhowtologin,register,andnavigatetheCFR.I.S.E.digitalportal

Upon training

IdentifyyourCFR.I.S.E.TeamandAppropriateCFPatients,Ages10-25• UsetheActionPlan(AppendixA)todefineyourgoalsandassigncareteammemberroles• Determine“mix”ofpatienttypes• TIP! Startwithahandfulofpatientsthatyouthinkwouldbereceptiveandeagertoparticipateintheprogram

IntroduceCFR.I.S.E.toPatientsandParents• Viae-mail,letter,orin-personwiththebrochure,tearsheetoratyourFamilyEducationday• TIP! Includeinformationabouttheprogramincenternewslettersoronyourwebsite

EnrollPatientinCFRISE.com• Patientscanenrollfromtheirsmartphone,tablet,orcomputer• TIP! Registerpatientsinclinicduringdowntimeorwhentheyareadmitted

AdministerCFResponsibilitiesChecklistand/orKnowledgeAssessments• Atclinicvisit(patientcancompleteduringvisitorcometoclinicwithcompleteddocuments)• Allowpatientstochoosetheirmodulesorleverageexistingprotocolsthatcategorizebasedonagetocapture

consistentmetricsforyourcenter• Assessmentsshouldberolledoutslowly,administer1-2pernewclinicvisit;ResponsibilitiesChecklistscanbe

completedlessfrequently,butgoalsshouldbereviewedateachclinicvisit• ProvideyoungerpatientswithacopyoftheGlossaryofCFTerms(AppendixC)forreference• TIP! Capitalizeonclinicdowntime,havepatientscompletemoduleswhilewaitingfortestresults(ex.OGTT),

betweenclinicianconsults,hospitalizations)

ReviewResultsWithPatient• Reviewallquestionsthatpatientsgotincorrectorskipped,reinforcingthecorrectanswers• TIP!Whendiscussingresultswithpatients15andunder,usenon-numericalscalesofmeasurementsuchas

‘Gold,SilverandBronze’or‘Stars’soastoreinforcethemessagethattheexerciseismeanttomeasureknowledge,notobtainpointsorgrades

RemediateKnowledge&ResponsibilityGaps• Identifytheappropriatecareteammembertoconducttheremediationonthetopicathandinadvanceofthe

clinicvisit• TIP! Keepabinderofeducationalresourcesthatcareteammemberscaneasilyfindandmakecopiesof

recommendedresourcestosendhomewithpatients

CompleteProgressReport• Capturemodulescoresandagreedupongoals• Havethepatientinitialanddatetheirgoalstoencourageownership• Makeacopyforthepatientchartandsendanothercopyhomewiththepatient• TIP! IntegrateintoyourEMRbyscanningtheProgressReport,capturingscoresandgoalsintheAVS(AfterVisit

Summary)orbuildingaflowsheetintothesystemtotrackmoduleresults

TIPSFORIMPLEMENTINGCFR.I.S.E.INYOURCLINIC

ThefollowingsuggestionsforimplementingatransitionandtransferprogramatyourCFCenterhavebeendrawnfromthecollectiveexperienceoftheTransitionAdvisoryCouncil.Belowareafewideasthatyoumaywanttoconsiderforyourpractice.

1. SetExpectationsThatCFTransferWillHappenandSupportingIndependenceisKeytoSuccessCFtransferfrompediatrictoadultcareshouldbeestablishedveryearlyonasakeymilestoneinthelifeofapatientwithCF,similartotheacceptedpracticeofmovingfromprimaryschooltohighschoolorhighschooltocollege.ThetransitionprocessinvolvesallmembersofaCFpatient’sfamily,anditisimportantthattheentirefamilyworkstogethertosupportthetransferofage-appropriatehealthcareownershiptothepatienttofosterindependence.Suggestionsforhelpingtosettheseexpectationsinclude:

• Atdiagnosis,introducethisconcepttoyourCFfamiliesinastandardizedway• Continuetoreinforcetheneedtobecomemoreindependentwithparentsandfamiliesasthepatient

getsolder• Acoupleofyearsbeforeexpectedtransfer(age16orso),carveouttimeforamemberofthe

pediatricteamtodiscusstheprocessoftransitionandtransferprocessindetail.Thisisveryimportantbecausetransitionandtransfercanbetimesofstressandworryforparentsandpatients.Explainingtheprocess,thetimeline,andtheroleoftheparentandpatientinpreparingfortransferarecritical

2.IdentifyandAddressGapsinCFKnowledgeandResponsibilitiesItisimportantthatpatientstakeongreaterresponsibilityfortheircareovertime.Twoimportantcontributorstopoorself-careareapatient’slackofunderstandingoftheirdiseaseandtheinabilitytoperformtheirtreatmentsandtherapiescorrectly.Suggestionsforovercomingthesebarriersinclude:

• Leverageestablishedknowledgeandskill-basedtoolsintheCFcommunity• ConsiderusingprogramslikeCFR.I.S.E.tohelpyoueducateandmonitoryourpatient'sprogressand

knowledgebase• Establishopenlinesofcommunicationwithyourpatientsandtheirfamiliessothattheyare

comfortableaskingquestionsaboutmedicalandemotionalissues• Spendone-on-onetimewiththepatientateachCFCentervisittoencourageindependent,open

dialoguebetweentheCFcareteamandpatient

3.TransitionIsaLong-TermProcessThatMayRequireDifficultConversationsParentsarenotalwayscomfortablegivingupcontrolandpatientsarenotalwaysmotivatedtotakemoreresponsibilityformanagingtheirCF.Asaclinician,itisimportanttobegindiscussionswiththefamilyaboutcedingage-appropriateresponsibilitytothepatientveryearlyon.Theseconversationscanbedifficultandyoumaybemetwithresistance.Suggestionsyoucanemployinclude:

• Usesupportivecommunicationtobeginthesesometimesdifficultconversations• Havecandiddiscussionswithfamiliesaboutwhenchildrenaredevelopmentallyabletoassume

certaintasks(eg,most10-year-oldscansetuptheirmedicationandadministeritbythemselvesbutprobablyaren’treadytobeindependentinrememberingwhenitistimetodoit)

• Encouragethedevelopmentallyappropriatelevelofparentalsupervisionandinvolvementgiventhetask

• Useproblemsolvingtoovercomebarrierstotransferringandassumingresponsibility

10TIPSFORSUPPORTINGTRANSITIONANDTRANSFER

4.StriveforContinuousImprovementTransitionisalongandinvolvedprocess,andnoonehascrackedthecodeonthe“best”waytoeffectivelytransitionpatients.Therefore,itisimportantthateachCFcareteamworktogethertoevaluateandimprovethisprocessovertime.Suggestionsforfosteringcontinuousimprovementinclude:

• ConsiderparticipatinginaCFFQualityImprovementprojectontransitionandtransfer• FosteropendialogueandcommunicationbetweenthepediatricandadultCFcareteams.Provide

continuousfeedbackonwhatyoucanbedoingbettertooptimizecare• Listentoyourpatients:askforhonestfeedbackfromthosewhohavejustcompletedoraregoing

throughthetransitionprocess.Considerconductingananonymoussurveyoraskingthefamilyadvisorycounciltoprovideinputonhowtomakeyourprogramstronger

5.IntroducetheAdultCFCareTeamtotheCFPatient&FamilyBeforeTransferOnewaytoeasetheanxietyassociatedwithtransferistoensurethatthepatientandfamilyareabletogainfamiliaritywiththeadultcareteamwellbeforetransition.SuggestionsforintroducingtheadultCFcareteaminapositivemannerinclude:

• HavetheadultcareteamstaffattendandpresentatCFfamilydaysatthepediatriccenter• EnsurethatmembersoftheadultCFcareteamattendfamilyadvisorymeetingstohearandto

addressconcernsraisedinthesemeetings• Scheduleaprivate“meetandgreet”betweenmembersoftheadultCFcareteam,theparent,andthe

patient1or2yearsinadvanceofthegoaltransferdatetointroducetheteam,gettoknowthefamily,anddeliveramessageaboutwaysinwhichpatientscanbesuccessfulduringthetransitionprocess.Thismeetingshouldnotincludeaphysicalexamandshouldremaincollegialandinformalsothatthefamilyisencouragedtoaskquestions

6.ChooseaGoalTransferTimelineThereissomevariabilityinhowatransfertimelineisset.SomeCFCenterstakethepositionthateachpatientshouldbetransferredbyaspecificage(eg,18th birthday).Somebelievethateachpatientisuniqueandshouldbetransferredbasedonemotionalandphysical“readiness.”Whicheveryoubelieve,itisclearthathavingatransfertiming“goal”setwiththepatientandfamilyhelpsallpartiesprepareforthisinevitability.Suggestionsforchoosingagoaltransfertimelineinclude:

• Holdameetingbetweenthepediatricteam,thepatientandparent/supportpersontodiscusstheprocessanddeterminewhatthetransfertimelinegoalwillbe

• Setatransfergoalwiththepatient2to3yearsinadvanceoftransfer• ClearlyoutlinewhatisinvolvedinCFtransfer;keymilestonesthatmustbeachievedtomeettimeline

7.CreateaTransferSummaryFormATransferSummaryFormisadocumentthatallowspatients,families,adultteams,andpediatricteam’saccesstoasynopsisofthepatient’smedicalhistorytoensurethisinformationisagreed-uponbyallparties.Suggestionsforthecreationandhandlingofthisforminclude:

• Provideadetailedcopytoallhealthcareproviders,thepatient,andthefamilyoftheCFpatient• Includeanyofthefollowingfields:pre-screeningresults,mostrecenttestresults,keyclinicalstats,

hospitalizationhistory,insuranceissues,vocationalchallenges,nutritionaldiscussions,co-morbidities,informationaboutfamilydynamics(forcareteamsonly)etc.ForthoseCFcentersthatshareElectronicMedicalRecord(EMR)systems,youmaybeabletopulltherequisiteinformationdirectlyfromyourinternalsystems

10TIPSFORSUPPORTINGTRANSITIONANDTRANSFER

8.CoordinateaFormal“Transfer”MeetingPriortoTransferDateBeforeapatientisreadytotransfer,considerholdingameetingtodiscussthepatient’smedicalhistory,ongoingplanforcare,andansweranyquestionsthatthecareteamorpatientfamilyhasaboutmovingforward.Suggestionsforthismeetinginclude:

• Meetingshouldbeheldaboutsixmonthstooneyearpriortotransfer• Meetingattendeesshouldincludeallmembersofthepatient’sfamily,pediatriccareteam(MD,nurse,

socialworker),alladultCFcareteammemberswhowillbeworkingwiththepatient,andmembersofthein-patientnursingteam(ifthepatientisafrequentin-patient)

• UseaTransferSummaryForm,whichisdevelopedPRIORtothismeeting,todrivethediscussion• Createaformalagendaforthemeeting• Dependinguponthedecision-makingprocessofthefullgroupduringthismeeting,thecareofthe

patientbetweenthepediatricandadultteamisdeterminedforthenextyear.(eg,Ifthepatientisorbecomesclinicallyunstableordevelopsacuteillness,itisdeterminedwhetheritwillbemanagedbythepediatricoradultteam)

• Setaspecifictransferdate(eg,WewillbeginseeingyouattheadultCFcenteronThursday,AugustX)

9.OrganizeSiteVisitstotheAdultHospitalWardandAdultCFCenterClinicYoucanoftenminimizeconfusionandstressbyde-mystifyingthe“unknown”.Providingpatientsandparentswiththeopportunitytobecomefamiliarwiththenewfacilitiesthattheywillsoonbeutilizingcanhelp.Suggestionsforthesitevisitinclude:

• Considerhavingamemberfromboththepediatricandadultteamatthesitevisittoexplainthedifferencesincare/operations

• Organizethesitevisitwithintheyearthepatientisbeingtransferredfrompediatrictoadultcare• Havethepatientfamiliarizeher- orhimselfwithparking,check-inprocess,locationofPFTlab,and

generalvisitflow

10.HoldRegularMeetingsBetweenthePediatricandAdultCFCareTeamsOpenandregularcommunicationbetweenpediatricandadultCFcareteamsiscriticaltothesuccessofanytransitionprogram.Apracticalwaytoensurethatthereisconsistentdialogueistoestablisharegularmeetingschedulebetweentheteams.Suggestionsforthismeetinginclude:

• Establishameetingcalendar(thismayvarybasedonthesizeofyourclinicsincelargerclinicsmayhavemorepatientstransferthroughouttheyearandthereforerequiremoremeetings)

• Establishaformalagendathatcanincludebothclinicalandprocessissues:casereviewofalltransition-agedpatients,planningforintegratedmeetingswiththepatients,coordinationandprocessstandardsfortransfer,gapsintransfercare,etc.

• Focusonmedicalandpsychosocialaspectsofthepatient’scare,aswellasnuancedissuesthatareimportantfortheadultteamtoknow(eg,parentdynamics,behavioralissues,worriesandconcerns)

• Holdmeetingsonceortwiceayearwiththefullclinicteamontheadultandpediatricteamstodiscussclinicalcare,andmoreregularoperationalmeetingswithsupportstaffmemberstodiscussoperationsandprocessissueswithrespecttothetransferprocessatyourCFcenter

• Pediatricteamshouldcopyandprovidedetailsfromallclinicvisits,tests,andnotesfortheyearpriortothetransitiontotheadultteam

10TIPSFORSUPPORTINGTRANSITIONANDTRANSFER

APPENDIX

APPENDIXACFR.I.S.E.ACTIONPLAN

Directions:Belowisanoptionalcommunicationtemplatethatcanbeadaptedbyyourcareteamandsentviae-mailorlettertopatientswhomyouwouldliketoinvitetoparticipateintheCFR.I.S.E.program.ThegoalofthetemplateistomakepatientsawareofCFR.I.S.E.beforetheirnextclinicvisit.

[PRINTONCLINICLETTERHEADANDMODIFYASNEEDED]

[Today’sDate]

JohnDoe123MainStreetAnytown,ST12345

Hello[INSERTNAMEOFPATIENTAND/ORPARENT],

WeinviteyoutoparticipateinauniqueeducationalprogramcalledCFR.I.S.E.[Responsibility.Independence.Self-Care.Education.]whichisbeinglaunchedat[CLINICNAME].Thisprogramhasbeendesignedspecificallyfor[CFfamilieswhohavechildrenorteenagerspreparingfortransitiontoadultcare]/[youngadultswhohaverecentlytransferredfromapediatrictoanadultCFCenter].

CFR.I.S.E.isbeingmadeavailabletoallofourCFpatientsbetweentheagesof10and25andconsistsofthefollowing:• AseriesofCFknowledgeandresponsibilityassessmentsonvarious topics tohelpidentifyareaswherewe,

thecareteam,canprovideyoumorefocusededucationandsupport• Asimpletooltohelptrackyourprogressandsetspecifictransitiongoals overtime• Aneasy-to-accesseducationalresourceguide thatyoucanconsulttolearnmoreaboutspecifictopics

Participationinthisprogramisoptional.WeareexcitedaboutCFR.I.S.E.andhopethatyouwillchoosetobeapartoftheprogram.Ifyoudochoosetoparticipate,wewillreviewtheprogramtoolswithyouandadministerthefirstassessmentsatyournextclinicvisit.Thismayextendthelengthofyourclinicvisitjustabit,butwedon’tanticipateanysignificantdelays.

Ifyouhaveanyquestionsbeforeyournextclinicvisit,pleasecontactmeatthenumber(aboveorbelow)[ornameanothercontactandaddtheircontactinformation].Wearelookingforwardtoseeingyouatyournextclinicappointmentscheduledfor:

Date:______________________________at________________________.

Kindregards,

[Dr.SallySmithorCenterStaffDirector,CysticFibrosisClinicInstitutionNameHere]

APPENDIXBLETTER/EMAILTEMPLATE