Transition To Adult Care - AAP
Transition To AdultCareSupported by HRSA MCHB Cooperative Agreement NumberU23MC26252
Acknowledgement Slides courtesy of David Wood, MD, MPHApril 2, 2015 http://hscj.ufl.edu/jaxhats
Objectives Define Health Care Transition Understand factors impacting health caretransition for youth with epilepsy Discuss Barriers to Transition to Adult Care Patient and Family Related Barriers Provide Barriers How to improve health care transition At the patient and family level At the provider levelSlide courtesy Dr. Wood, 2015
90% of seriously ill childrenbecome adultsSlide courtesy Dr. Wood, 2015
The bad news:They have to go through this to get there!Slide courtesy Dr. Wood, 2015
Health Care Transition 18 million U.S. adolescents (ages 18-21) are movinginto adulthood. Adolescents will need to transition from pediatric toadult-centered health care Transition planning between youth, family, andprovider is important Demonstrates improvements in satisfaction,continuity of care, and greater adherence to care.Source: U.S. Census Bureau, Current Population Survey, 2013 McDanagh et al, 2007; Wojciechoski et al, 2002
What is Health CareTransition?Transition PreparationHealth Care Transition (HCT)The purposeful, planned movement ofadolescents and young adults from childcentered to adult-oriented health caresystems.Increased responsibility for healthcare self-management;understanding and planning forchanges in health needs, insurance,and providers in adulthood; shouldoccur across ages 12-21 Transfer of CareDiscrete event, physical transfer froma pediatric to an adult provider;should occur between ages 18-21 Successful TransitionAAP Consensus Statement, 2011Patients are engaged in and receiveon-going patient-centered adult care.Slide courtesy Dr. Wood, 2015
Six Core Elements of HealthCare TransitionSource: GotTransition.org - Health Care Providers. (n.d.). Retrieved April 7, 2015,from http://www.gottransition.org/providers/index.cfm
Six Core Elements of HealthCare TransitionSource: GotTransition.org - Health Care Providers. (n.d.). Retrieved April 7, 2015,from http://www.gottransition.org/providers/index.cfm
Changing Epidemiology ofDiseases Arising in Childhood Cerebral Palsy In US 800,000 people have CP; 400,000 are adults 85% of young adults with CP will reach age 50, 70% will reachage 60; Spina Bifida 80% probability of survival until age 30Slide courtesy Dr. Wood, 2015Sources: Murphy KP, et Al. Dev Med Child Neural 1995;37:1075–84. Frisch and Msall. Developmental Disabilities Research Reviews 18:84–94 (2013) Hemming, et. Al. Developmental Medicine & Child Neurology 2006, 48:90–95
Increasing Life Expectancyin Persons with Spina BifidaNew York Cohort born in late 1980-2000sSlide courtesy Dr. Wood, 2015Cambridge Cohort born in late 1960sSources: Oakeshott, et. Al. Arch Dis Child. 2012 Kancherla. Birth Defects Research 2014
Why is HCT Important? Without support during transition youth may: Lose of insurance Decreased access Decreased medication adherence Increased ER visits, hospitalizations Deterioration in health; poor out comes HIV-decreased CD4 counts; Diabetes-worsening control; Transplantrejection; Congenital Heart Disease—premature deathSlide courtesy Dr. Wood, 2015Sources:Institute of Medicine, 2007; Boyle et al. 2001; Callahan et al. 2001; Betz 2003; Freyeret al. 2008; Tuchman et al. 2008), Watson 2000; Annunziato et al. 2007; Gurvitz et al.2007; Dugueperouxet al. 2008; White 2002; Williams 2009. AHRQ Technical Brief#15; 2014
HCT TimelineAGE: 12Make youthand familyaware oftransitionpolicy14161818-2223-26Initiatehealth caretransitionplanningPrepareyouth andparents foradultmodel ofcare anddiscusstransferTransitionto adultmodel ofcareTransfercare to adultmedicalhome and/orspecialistswith transferpackageIntegrateyoungadults intoadult careSource: GotTransition.org - Health Care Providers. (n.d.). Retrieved April 7, 2015, fm
Childhood Epilepsy 1% of children Association with other conditions (prematurity, ICH),syndromes, genetic conditions (NF, TS, Fragile X, etc.) 30% with associated intellectual disability 30% with learning disorders 30% behavioral/mental healthSlide courtesy Dr. Wood, 2015
Slide courtesy Dr. Wood, 2015Source: Bindels-de Heus, et. Al. Intellectual And DevelopmentalDisabilities; 2013, Vol. 51, No. 3, 176–189
Trajectory of Care forEpilepsy Patients well-controlled epilepsy in cognitively normal patients difficult to treat epilepsy in cognitively normal patients, mostcommonly focal onset; intractable epilepsy associated with cognitive delaySlide courtesy Dr. Wood, 2015
Lifespan health trajectory is shaped byrisk and protective factorsSlide courtesy Dr. Wood, 2015Source: Halfon, Inkelas and Hochstein, 2000
Factors Impacting HCT Social TrendsYouth developmentHealth insuranceAvailability of adult providersPreparation by pediatricians andpediatric specialistsSlide courtesy Dr. Wood, 2015
Secular Changes:Emerging Adulthood 18-29 More youth pursuing higher education 1940’s—14% post HS ed. 1990’s—60% Mixed paths of education & vocation Including youth with serious health conditions Age of marriage is increasing 1940-1950’s it was 20 years of age; 1990’s it rose to 25-29 years of age Increase in length of transition —up to late 20’s, early 30’s.Slide courtesy Dr. Wood, 2015Source:U.S. Census Bureau , 1997
Cognitive Development: Piaget’sFormal Operational ThoughtEARLY(11-13)ConcretethoughtNo futureperspectiveMIDDLE(14-16)AbstractionHas futureperspective;not ureorientedSlide courtesy Dr. Wood, 2015
Adolescent Brain DevelopmentSlide courtesy Dr. Wood, 2015Source:Somerville, Jones, & Casey (2010)
Family and Youth FactorsComplicating Epilepsy Care for YYA Youth Learning DisordersBehavioral and Mental healthIntellectual DisabilityCo-Morbid Medical ProblemsSocial Stigma Family Challenges Coping, isolation Social challenges such as poverty, housing and relationship instabilitySlide courtesy Dr. Wood, 2015Source: R.P.J. Geerlings, A.P. Aldenkamp, et. Al. Transition to Adult Medical Carefor Adolescents with Epilepsy. Epilepsy & Behavior 44 (2015) 127–135
Medical Decision-Making andDisease Self Management Immediate benefits outweigh long term risks Inconvenience of Bowel program vs. complications from constipationTaking daily medications requires commitment to routinePain of Depo shot vs. risk of pregnancyStaying out with friends vs. self-catheterization Future orientation & abstract throught needed forcompetent self managementSlide courtesy Dr. Wood, 2015
Medication Adherence inEpilepsy During Transition Associated with side effects, behavioral, mental healthissues, ID/cooperation, 35% missed 1dose in the past month 55% reported stopping AED w/i 1-3 months. Among those 2/5 reported they had a seizure as aconsequence. 70%, forgetfulness or not having the pills with them was thereason for not taking the prescription. Caregiver commonly responsibleSlide courtesy Dr. Wood, 2015Sources: Asato MR,. J Child Neurol 2009;24:562–71; Iyer A, Appleton R. Seizure 2013;22:433–7. Nordli Jr DR. Epilepsia 2001;42(Suppl.8):10–7.
Impact of Epilepsy onAdolescent DevelopmentSlide courtesy Dr. Wood, 2015Source: Asato MR, Manjunath R, Sheth RD, et al. Adolescent and caregiverexperiences with epilepsy. J Child Neurol 2009;24:562–71.
Family Barriers Readiness to let go Attachment to pediatric providers Recognition of child’s ability to care for self and self-advocate Family cohesion and communication Stressed from many angles Poverty and disadvantaged environment Less services and supports Perhaps more natural supportsSlide courtesy Dr. Wood, 2015
Inadequate Health Insurance Aging out of health care plans/services Medicaid—18 SCHIP/KidCare—19 Title V Safety Net funds--21 Benefits in temporary jobs often limited Change in eligibility rules for SSI Loose Medicaid in non-expansion states Cost barriers for families to keep youth on parental workrelated insuranceSlide courtesy Dr. Wood, 2015
Youth with SHCN Often LackHealth InsuranceSlide courtesy Dr. Wood, 2015Source:Callahan and Cooper. Pediatrics. 2007:119;1175
Percentage of Uninsured Young Adults Declined from2011 to 2013; Gains Were Largest Among Low-Income Young AdultsPercent of young adults ages 19–29100Insured now, time uninsured in past yearUninsured 127151602011 20132011 2013Total 133% FPL2011 2013133%–249%FPLNote: Totals may not equal sum of bars because of rounding. FPL refers tofederal poverty level.2011 2013250%–399%FPL2213167992011 2013400% FPLor moreSlide courtesy Dr. Wood, 2015
Pediatric versus Adult Care Pediatric Care Relational Developmental Family Centered—1 to many Social support/nurturing Specialty focused orInterdisciplinary (carecoordination) Adult Care Cognitive Static/declining function Patient Centered-- 1:1communication Knowledge Empowerment Primary Care focused orMultidisciplinarySlide courtesy Dr. Wood, 2015Source:Rosen D. J Adolesc Health 1995;17:10
Comfort of Adult Providers byCondition 2008 New HampshireSlide courtesy Dr. Wood, 2015
Slide courtesy Dr. Wood, 2015Source:Camfield Epilepsia, 52(Suppl. 5):21–27, 2011
Confidence of Adult NeurologistsChildhood Epilepsies Survey of Canadian Neurologists at the CanadianNeurological Sciences Federation Congress in 2013Slide courtesy Dr. Wood, 2015Source:Borlot F, Tellez-Zenteno JF, Allen A, Ali A, Snead OC III, Andrade DM. Epilepsytransition: challenges of caring for adults with childhood-onset seizures. Epilepsia.2014; 55(10): 1659-66.
Confidence of Adult NeurologistsChildhood Epilepsies--IISlide courtesy Dr. Wood, 2015Source:Oskoui; Can J Neurol Sci. 2012; 39: 202-205
Why Internists Won’tTake YSHCN Lack of training in conditions arising in childhood Lack of Time/reimbursement Lack of support for care coordination Lack of Access to super-specialists adolescent medicine; adult congenital heart; adult spasticity management, etc. Lack of medical summary /communicationSlide courtesy Dr. Wood, 2015Source;Okumura et al, JGIM 2008; AAP Periodic Survey 2008;Thompson et al, Pediatrics, 2009; Peter N. Pediatrics. 2009; 123;417
National Survey of Parents of Childrenwith Special Health Care Needs 17,114 parents of YSHCN aged 12-17 Only 40% of parents got transition communication1.2.3.4.Shifting care to an adult providerFuture adult health care needsUpcoming eligibility changes in health insuranceEncouraging youth to take responsibility for their care Less likely to receive HCT counseling if male, non-white,public/no insurance More likely if have a medical home (55% vs. 29%)Slide courtesy Dr. Wood, 2015Source: McManus et al, Pediatrics, 2013 Lotstein et al, Pediatrics 2009
Transition Preparation Parents of youth with Cerebral Palsy report low rates oftransition counseling 46% were counseled on self-management; 29% discussed transfer to adultproviders Parents of youth with Profound ID report not feeling preparedto move to adult care. Limited preparation; Fragmented care in adult system; Their suggestions toimprove transition: early start, information provision, coordination betweenpediatric and adult care.Slide courtesy Dr. Wood, 2015Sources: Blackman and Conaway. Adolescents with CerebralPalsy. Clinical Pediatrics. 2014 Bindels-de Heus, et. Al. Intellectual And DevelopmentalDisabilities; 2013, Vol. 51, No. 3, 176–189 Sawicki, Wood, et. Al. Pediatrics. 2011
Transition FrameworkPreparation ProcessChanging Medical CareOutcomeAccess toContinuous, High QualityMedical CareChanging InsuranceDevelopingSelf-Care AbilitiesEducation/Job PlanningMaximizedQuality of LifeAnd Role AttainmentSlide courtesy Dr. Wood, 2015Source:Lotstein et al, Pediatrics 2011
Integrated Model of HCTParent/FamilyYouthSlide courtesy Dr. Wood, 2015National Coordinating Centre for NHS Service Delivery andOrganization Research and Development (NCCSDO)(www.sdo.lshtm.ac.uk)
Improving Transition for YYAwith Profound ID 131 Parents of YYA (16-26 in Holland) Inquired about HCT experience Recommendations Early startInformation provisionA joint consultation between pediatric and adult careJust the start!Slide courtesy Dr. Wood, 2015Source:Bindels-de Heus, et. Al. Intellectual And DevelopmentalDisabilities; 2013, Vol. 51, No. 3, 176–189
How To Improve Health CareTransition:Patient and Family StrategiesSlide courtesy Dr. Wood, 2015
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Encourage Patient SelfManagement and Adherence Make patients — including those who have cognitivedisabilities — central members of their health-care team Have them participate in care decisions Help them build self-advocacy skills, Speak directly to them about their care Caregivers to step into a supportive, rather than directive, role Arrange for formal neurocognitive and functional testing ofpatients who have cognitive impairment Refer to disability-related advocacy and support groups foryouth and young adultsSlide courtesy Dr. Wood, 2015Source:Wagner. Gillette Children’s Hospital. PediatricPerspectives. 2007
What YOU can do:Take Charge Of Your Health Care! Use the GLADD approach when talking to doctors or nursesand in managing health care: Give information Listen and learn Ask questions Decide on a plan Do your part Teach your child how to use GLADD!Slide courtesy Dr. Wood, 2015Source: www.floridahats.org
Practice Good Listening Skills Listening includes UNDERSTANDING Pay attention to body language Sit upLean inAsk questionsNodTrack the speakerSlide courtesy Dr. Wood, 2015
Take Charge Now!Give – Listen – Ask – Decide – Do1.2.3.4.5.6.7.8.9.Communicate how you are feeling (Handy High 5)Practice good listening skills (SLANT)Remember what your doctors/nurses say (use a voice recorder!)Learn more about your condition (books, web site)Prepare questions ahead of time (Ask Me 3)Participate in developing a plan of care (FloridaHATS resources)Practice negotiating skills (self-advocacy guides)Carry a health summary with you (My Health Passport)Learn how to schedule and navigate doctor’s visits (watch videosand practice!)10. Manage your medications (MyMedSchedule.com)Slide courtesy Dr. Wood, 2015
HillsboroughHATS Post CardSlide courtesy Dr. Wood, 2015
School ResourcesClassroomCurriculum50Links to Lesson PlansParent/StudentHandoutsSlide courtesy Dr. Wood, 2015
My Health Care A health literacy and communications training programsponsored by FDDC 22-hour curriculum Designed for classroom of learnersPPT presentations with imbedded videosInteractive role play, modeling, gamesImplement in 2-3 hour blocks over 9 weeksStep-by-step Instructor’s Guide andaccompanying video th-careprevention Available online in 2015Slide courtesy Dr. Wood, 2015
Educational MaterialsSlide courtesy Dr. Wood, 2015
Archive the TransitionInformation Form on asecure MY PLACE siteat HealthyTransitionsNY.orgSlide courtesy Dr. Wood, 2015
Key Elements of a PatientOriented HCT Care Plan Information to make the patient an informed consumer Know their medication, devices, equipment, supplies. Basic history, physicians, providers, insurance Know how to take care of themselves on a day-to-day basis Know what to be concerned about Know what to do in an emergencySlide courtesy Dr. Wood, 2015
Tools to AssistSlide courtesy Dr. Wood, 2015Source: My Health Passport
Slide courtesy Dr. Wood, 2015
Empowering Providers Systems approach Within large University/HC System settings Pediatrics and Adult Specialty Care Children’s Hospital embedded in adult health care system Transition Clinics: General/Specialty Toronto Epilepsy Transition Clinic Handoff or overlap: General/Specialty Got Transition: 6 Core Elements FloridaHATS/JaxHATS Provider Transition ToolkitSlide courtesy Dr. Wood, 2015
Evidence for TransitionSupport Effectiveness No evidence of HCT interventions in Epilepsy Most research from outside the US Studies done in CF, Type 1 Diabetes Contact with adult providers before transfer Involvement of care coordinators in transition preparation and systemnavigation Emerging interactive, web-based tools,Slide courtesy Dr. Wood, 2015Source: Bloom et al, Journal of Adolescent Health, 2012; Huang 2014
New Models of Health CareTransition Clinics Sub-specialty based: Intellectual Disabilities (Down Syndrome), Nephrology (STARxProgram at UNC), Peds Cancer Survivor/Late Effects Clinics Toronto Epilepsy Transition Clinic (Sick Kids) Primary care based: JaxHATS Program at University of Florida UCLA Med-Peds Transition Care Program Texas Children's/Baylor Transition ProgramSlide courtesy Dr. Wood, 2015
6 Core Elements of HCTTransitioningYouth to AdultProviders(Pediatric, Family Medicine, andMed-Peds Providers)Transitioning to anAdult ApproachWithout ChangingProviders(Family Medicine and Med-PedsProviders)IntegratingYoung Adultsinto Adult HealthCare(Internal Medicine, Family Medicine, andMed-Peds Providers)1. Transition Policy1. Transition Policy1. Young Adult Transition and Care Policy2. Transition Tracking and Monitoring2. Transition Tracking and Monitoring2. Young Adult Tracking and Monitoring3. Transition Readiness3. Transition Readiness.3. Transition Readiness/Orientation toAdult Practice4. Transition Planning4. Transition Planning/Integration intoAdult Approach to Care4. Transition Planning/Integration into AdultPractice5. Transfer of Care5. Transfer to Adult Approach to Care5. Transfer of Care/Initial Visit6. Transfer Completion6. Transfer Completion/Ongoing Care6. Transfer Completion/Ongoing CareSlide courtesy Dr. Wood, 2015
Transition Readiness (TR)Assessment and Training Assess readiness to transition Self management skillsMaking appointments and talking with providersUnderstanding of insuranceOther life goals Specific Transition Readiness Visits Assess transition readiness Education, negotiate transition goals Homework assignments make medication list/calendar; bring list of questions for the doctor or nurse next visit be in room alone with doctorSlide courtesy Dr. Wood, 2015
de courtesy Dr. Wood, 2015Source:TRAQ: Transition Readiness Assessment Questionnaire
Key Elements of a ProviderOriented Transition CarePlan Provides good hand-off to adult providers—primarycare and specialists Key history summarized Multi-disciplinary input Recommends future supports and treatment Anticipates future complications Recommends monitoring approach and frequencySlide courtesy Dr. Wood, 2015
Medical Transfer Summary for YYA withEpilepsy Etiology/Epilepsy syndrome Age of onset (first seizure) Age of onset (first seizure) Neurological examination and intellectual assessment Laboratory/CT results and dates/MRI results and dates; EEG summary of findings and date ofmost recent EEG Clinical Course Seizure types over the course of the illnessPresent seizure control with seizure description(s) and frequency (date of most recent by type); precipitating orprovoking factorsLongest seizure-free intervalEpisodes status epilepticus or non-convulsive status Medications Medications used previously, top dosage and reason for discontinuation Present AEDs and length of time on this regime at the time of transferRescue medications presently used Additional treatments (ketogenic diet, VNS; Epilepsy surgery (what, when and hospital namealong with pathology reports) Other significant medical conditions and treatments Social History, Driving, Education, Work, Sexuality, Living Situation, Life GoalsSlide
centered to adult-oriented health care systems. Health Care Transition (HCT) Successful Transition Patients are engaged in and receive on-going patient-centered adult care. AAP Consensus Statement, 2011 What is Health Care Transition? Slide courtesy Dr. Wood, 2015
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A Guideline for Transition from Paediatric to Adult Health Care for Youth with Special Health Care Needs: A National Approach 2 CAPHC Transitions Community of Practice June 2016 The following is included in this document: 1. An introduction to the topic of transition to adult care and the unique health and psychosocial needs for YSHCN; 2.
Every pediatric practice should have a well-defined policy that clearly states the expectations for the health care transition to an adult model of care. The office transition policy should include: The expected age of patient transfer to an adult model of care The patient's responsibilities in preparing for the transition
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NORTH ATLANTIC TREATY ORGANIZATION NATO STANDARDIZATION AGENCY (NSA) NATO LETTER OF PROMULGATION 03 April 2013 1. AAP-06(2013)-NATO GLOSSARY OF TERMS AND DEFINITIONS (ENGLISH AND FRENCH) is a NATO Allied publication. The agreement of nations to use this publication is recorded in STANAG 3680. 2. AAP-06(2013) is effective upon receipt.
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