WIXLIB

35ASSESSMENT OF TRANSITION READINESS. The providerTRANSFER OF CARE. Pediatric providers should confirm theshould conduct regular transition readiness assessments offirst adult provider appointment, transfer the patient when hepatients beginning at age 14. Patients and providers shouldor she is stable and prepare a transfer package, including thecommunicate about readiness and jointly develop transitionfinal transition readiness assessment, plan of care, medicalgoals that promote self-advocacy and self-care.summary and emergency care plan. The package should besent to the identified adult provider.TRANSITIONPL AN64TRANSITION PLANNING. Patients and providers shouldTRANSITION COMPLETION. Pediatric providers should follow-develop and regularly update the patient’s transition plan ofup with patients and caregivers three to six months after thecare. Providers should prepare patients for an adult approachlast pediatric visit to confirm transfer of care. Pediatric andto care at age 18. Patients, caregivers and providers shouldadult primary and specialty care doctors should continue todiscuss the need for decision-making supports for youthbuild collaborative partnerships.with intellectual disabilities, optimal time of transfer and theidentification of adult providers. Linkages to insurance andother resources should be provided.EVIDENCE TO ACTION BRIEF SPRING 20177

WHAT WE LEARNEDPolicyLab researchers and colleagues sought to betterunderstand the challenges of the transition process from theperspectives of patients and families, pediatric providers, andadult providers.In 2011, we conducted a national survey of adult providerswho frequently cared for adult patients with pediatric chronicconditions.9 Additional surveys and interviews between2014 and 2016 included CHOP pediatric providers, PennMedicine Health System (Penn) adult providers and patientswho had recently transitioned out of the CHOP network.10,11We compared the transition process experienced in thesesettings with Got Transition’s “Six Core Elements of HealthCare Transition” (Figure 3), and identified perceived challengesto successful transition into adult care. The barriers foundthrough the CHOP and Penn surveys were consistent with our2011 national survey, indicating that our key takeaways arelikely relevant for many providers across the country.8TRANSITIONING TO ADULT CARE: SUPPORTING YOUTH WITH SPECIAL HEALTH CARE NEEDSPATIENTPERSPECTIVESPEDIATRIC PROVIDERPERSPECTIVESADULT PROVIDERPERSPECTIVES

Figure 4KEY FINDINGS: CHALLENGES FOR PATIENTS AND PROVIDERS IN ADULT CARE SET TINGSRESOURCESWORKFLOWSTRUCTURAL & PHYSICAL SPACEAdult institutions often have lessFor patients who use medicalWhile pediatric outpatient facilitiesmultidisciplinary support staff intransport, there is a lack of flexibilityare built to have space for multipleoutpatient clinics, such as socialwhen the transport runs late, leavingfamily members in an exam room,workers, care coordinators andpatients to reschedule appointments.adult outpatient facilities can havenursing staff.Adult institutions often do not haveinadequate space for wheelchairsand other medical equipment.Adult receiving providers oftensedation services during medicalhave limited time to review thetests, which children’s hospitalsFor patients with autism orcomplete medical history of newroutinely provide when necessary.behavioral challenges who wouldyoung adult patients with specialbenefit from a quieter waiting area,health care needs, and pediatricadult outpatient facilities oftenproviders often don’t make suchlack the extra clinical space toa detailed summary available.accommodate these needs.PATIENT PERSPECTIVESThrough interviews conducted with 24 adult patients who transferred out of the CHOP network between 2013and 2015, we discovered the following common challenges that patients faced during their transition process:12Chaotic transfer and poor care coordination.Care coordination was the most commonly citedtransition concern, especially for patients thatrequired frequent visits with multiple specialists.By the time of transition to adult providers,patients and their pediatric caregivers hadlong-established routines that accommodatedthe patient’s clinical needs and caregiverlogistics, such as medical equipment, workschedules, office visit durations, and physicalaccommodations and transportation.When transferring to a new provider, new routinesneed to be established, and many adult caresettings lack the time and resources to coordinatewhat can be a complicated medical visit.“I’m trying to do at least two visits at one time[because I am wheelchair-bound and don’tlive in the city]. I would say that every weekI’ll have three different appointments backto back. People don’t understand how hard itis for me to even get to one doctor’s office.”EVIDENCE TO ACTION BRIEF SPRING 20179

Poor preparation.Children and adolescents are rarely expectedto recount their medical problems or nametheir medications and allergies in pediatricsettings without support from their parents.Consequently, they are often unpreparedto engage with adult health care systemsindependently as the primary medical decisionmakers. Patients who have transitioned toadult care often described being surprisedand unprepared for the level of autonomy andself-advocacy that adult institutions expectedthem to have.“I was highly used to having [the pediatrichospital] remind me you got to call this[doctor]. You got to call that [doctor]. So Ikind of lost that. The most eye openingthing about transition was that I had tocoordinate everything myself, like an adult.”Loss of comprehensive insurance coverage.Virtually all adolescents with the most complexmedical conditions are eligible for Medicaid tohelp cover the extraordinary cost and level ofcare they need, which often go beyond the limitsof private insurance coverage. Eligibility for thecomprehensive set of Medicaid benefits availableto children ends at age 21 (Figure 5). Additionally,the Social Security Administration redeterminesSocial Security Insurance (SSI) eligibility whena child turns 18 using adult disability standards;typically one in three such young adults lose their10TRANSITIONING TO ADULT CARE: SUPPORTING YOUTH WITH SPECIAL HEALTH CARE NEEDSSSI benefits13 and potentially Medicaid eligibility.Furthermore, young adult patients rarely receiveappropriate guidance on switching into anadult health insurance plan prior to losing theseservices and are often left scrambling for care.Loss of services.For certain conditions, such as cerebral palsy,most pediatric health care systems havemultidisciplinary clinics where a number ofdifferent specialists can evaluate a child at onetime, such as rehabilitation doctors, orthopedicsurgeons, physical therapists, occupationaltherapists, speech therapists and dietitians.This is generally not the case in adult healthcare settings that are not specially equipped tomanage patients with these complex conditions.“Once CP [cerebral palsy] clinic at thepediatric hospital is gone, then I no longerhave a feeding clinic. And I don’t have PT[physical therapy] or OT [occupationaltherapy], which I had at school.”Lack of adult providers.In transferring to adult health systems, patientsand families cite difficulty identifying adultproviders and are often left to make laboriousphone calls to provider locations. It can bechallenging to find a provider that takes theirinsurance, is accepting new patients and has anunderstanding of young adults with complexconditions that began in childhood.

Figure 5FALLING OFF THE EPSDT AND SCHOOL SERVICES CLIFFAge:5101520SERVICES OFFERED UNDER AGE 21 REFERR AL S AND ASSISTANCE INSCHEDULING PHYSICAL EX A MS HEARING AND VISION TESTINGSERVICESOFFEREDAF TERAGE 21 GROW TH AND DEVELOPMENTALASSESSMENTS TR ANSPORTATION ASSISTANCETO AND FROM APPOINTMENTSDURING CHILDHOOD AND ADOLESCENCE, PATIENTS WITH SPECIAL HEALTH CARE NEEDS RELY HEAVILYON MEDICAID’S EARLY AND PERIODIC SCREENING, DIAGNOSIS AND TREATMENT (EPSDT) BENEFIT ANDACCOMMODATIONS PROVIDED IN THEIR SCHOOLS.Medicaid’s EPSDT benefit ensures that childrenchildren, reasonable accommodations include specialreceive screenings to catch potential healththerapies received during the school day.problems early, and guarantees coverage of allmedically necessary services, meaning those neededto support their development and address physicalAfter age 21, EPSDT is no longer federally mandated,and youth age out of their school systems.and mental conditions.Consequently, coverage and availability of servicesSchools must provide accommodations to help childrenspecial health care needs—namely physical therapy,with special health care needs participate in schooloccupational therapy and speech therapy—is oftenactivities at their full potential. For example, for somediscontinued when they reach adulthood.used to maintain function for individuals withEVIDENCE TO ACTION BRIEF SPRING 201711

PEDIATRIC PROVIDER PERSPECTIVESTo evaluate the policies, processes and obstacles surrounding the transfer of care process at CHOP,we conducted a survey of a total of 153 individuals in 201414 that compared CHOP transition of carepractices against the national standards established by Got Transition. The survey found the followingcommon challenges:Insufficient time and low adherence totransition guidelines.Participation in any one of Got Transition’s“Six Core Elements of Health Care Transition”(Figure 3) ranged from 47 percent (havinga transition policy) to 13 percent (follow-upafter transfer completion). Seven percent ofparticipants did not engage in any of the sixcore activities of transition. CHOP providersmost commonly cited inadequate time asthe main reason for not being able to follownational guidelines. Each of these activitiestake a considerable amount of time, suggestingthat additional staffing support is needed forsuccessful routine transition processes. Ourfinding is consistent with other nationalsurveys that also describe low rates ofcompleting transition activities.15,16Lack of consensus on transition policiesand procedures.Despite the existence of national guidelines,there was a lack of consensus across all of CHOP’spediatric primary care and specialty serviceson if, when and how to transfer patients toadult-focused care, particularly for youth withcomplex medical needs. Most participants saidthat the top barrier to transitioning patients waslack of agreement among providers about thetransfer process, either within one departmentor across different specialties. Very few hospitalshave transition policies that could address theseinconsistent practices and procedures.Poor documentation of transition discussionsor activities in the health record.Nearly two-thirds of participants did not updatethe patient’s electronic medical record (EMR)once care was transferred to an adult provider.Of the remaining one-third of participantswho did document the transfer in the EMR,few did so in one consistent location within the12TRANSITIONING TO ADULT CARE: SUPPORTING YOUTH WITH SPECIAL HEALTH CARE NEEDSrecord, making it difficult to track and monitortransition practices. Without consistentdocumentation of the status of transition, otherspecialty providers in the patient’s care teammay not know to also transfer their portionof the patient’s care to the adult providers,potentially further fragmenting the patient’scare. Poor documentation of whether patientshave transferred also creates confusion forpediatric emergency room staff, who may notknow whether a patient should be treated at thepediatric hospital or be transferred to the adulthospital for appropriate care.Inadequate access to adult providers withsufficient medical expertise.Pediatric providers were reluctant to transferpatients to adult providers because theyperceived a lack of adult providers who hadthe desire or expertise to take care of theirpatients. When adult providers were identified,access to these providers was partly limitedby restrictions in provider referral networksincluded by insurance. For patients withdisabilities severe enough to be eligible forSSI and consequently covered by Medicaid,many adult practices or hospital systemsdid not accept Medicaid or certain Medicaidmanaged-care products, or may cap the numberof patients on Medicaid in that practice,potentially limiting access.Failure to address medical decision making.As youth with intellectual disabilities enteradulthood, providers should assess theirability to make medical decisions on theirown in order to help them progress towardsmedical independence or to start the processof establishing a proxy in the form of a legalguardian or formal long-term caregiver.Pediatric providers in our survey reportedthat they did not conduct such an assessmentwith their patients about half of the time.

ADULT PROVIDER PERSPECTIVESIn 2011, we conducted 22 interviews9 with adult providers across the country who frequently cared foryoung adults with pediatric chronic conditions. Nearly all providers in this national study reported thatmajor challenges to caring for new young adult patients with special health care needs included notreceiving medical records from a pediatric provider; insufficient time and high administrative burdenleading to significant financial constraints; insufficient training and expertise in caring for young adultswith pediatric chronic conditions; and poor care coordination and an ill-defined medical team.In 2016, PolicyLab followed up on the 2014 pediatric provider study with a comparable survey of adultcare providers at Penn.11 Similar barriers to a patient’s transition from pediatric to adult care also emergedamong these adult providers.Inadequate time for office visits and carecoordination between visits.Approximately 60 percent of adult providersidentified the two largest barriers to taking careof young adults with childhood onset specialhealth care needs to be the amount of timeand level of care coordination required duringand between office visits. No mechanismcurrently exists to bill for non-face-to-face carecoordination for patients on Medicaid or privateinsurance, and providers are therefore notadequately compensated for the additional timeit takes to effectively manage their patients’ care.Lack of information on communityresources, care coordinationreimbursement and legal issues.Several adult providers echoed pediatric providerconcerns that many of them are neither trainednor have experience caring for adults withchronic conditions that begin in childhood.Adult providers regularly requested moreinformation on a variety of medical conditions,community resources, care coordination,enhanced reimbursement and legal issues, suchas guardianship, suggesting a need to educate andmap out non-medical resources for adult providersand for young adults with chronic disease.Inconsistent levels of communicationfrom pediatric providers.Adult providers indicated that certain typesof information from pediatric providers, suchas updated medical summaries and patientmedical records sent prior to the first adultvisit, were absolutely necessary to safely carefor a young adult patients with childhood-onsetchronic conditions (Figure 6). Only about onein four adult providers said this was always oralmost always provided. About 10 percent said itwas never available, indicating significant roomfor improvement in pediatric and adult providercommunication and handoffs.11Figure 6ADULT PROVIDER OPINION ON NECESSARY COMPONENTS OF PEDIATRIC-TO-ADULT PATIENT HANDOFFSUpdated Medical SummaryMedical Records Prior to the First VisitPediatrician Remains AccessibleAccess to Pediatric EMRVerbal Doc-to-Doc HandoffPediatric Visit After First Adult Visit0%10%20% Absolutely Necessary30%40%50% Helpful But Not Necessary60%70%80%90%100% Not HelpfulEVIDENCE TO ACTION BRIEF SPRING 201713

WHAT WE CAN DOFrom our surveys and interviews with patientsand providers, we have identified severalrecommendations that providers, healthsystems, policymakers and researchers canadopt to improve the outcomes of youth withspecial health care needs. Some of theseRECOMMENDATIONS FORPROVIDERS AND PRACTICESRECOMMENDATIONS FORHEALTH CARE SYSTEMSRECOMMENDATIONS FORPOLICYMAKERSsolutions directly address problems identifiedin the studies conducted above, and othershave been well defined in the literature aroundtransition to adulthood for young adults withchronic illness or disability.RECOMMENDATIONS FOR PROVIDERS AND PRACTICESHealth care providers are on the front lines caring for patients, and families of patients, with complex andchronic conditions. Right alongside families, they face the challenges and frustrations of coordinating care andworking to ensure that their patients are able to achieve the best possible outcomes. Transitioning care fromone network to another, particularly with young adult patients who are learning to manage their own health, isincredibly challenging. This section provides recommendations to address many of these challenges and ensure asmooth transition of care for everyone involved.14TRANSITIONING TO ADULT CARE: SUPPORTING YOUTH WITH SPECIAL HEALTH CARE NEEDS

P R O B L E M 1:Youth are unprepared to manage their own care, and many youthand their families are unaware of potential loss of services at age 21.CHOP’s MultidisciplinaryIntervention NavigationTeam (MINT)R E C O M M EN DAT I O N:Start early in preparing adolescents, or their proxy caregivers, to takeon the role of primary medical decision maker in managing their careonce they reach adulthood by:MINT is a novel clinical service Better educating youth with chronic illness on their own conditions,self-management and system navigation while still in pediatric settings.that provides comprehensive Regularly assessing transition readiness using the Transition ReadinessAssessment Questionnaire. This step is widely recommended by theAmerican Academy of Pediatrics and other professional societies, and isone of the Got Transition six core elements.17 The information from theassessment can be used to plan education for the patient and family, andcommunicate the patient’s current skills to other providers. Childrenand adolescents should be able to identify their medical problems,medications and allergies without support from their parents, or at leastknow how to access that information.transitioning from CHOP to adult Addressi

his ongoing medical needs. Although he is an adult, he still sees a pediatrician and mostly pediatric specialty providers because his mom has been unable to get help in identifying adult providers who feel equipped to provide his care. Although she managed to find an adult sleep physician, John's mom is usually told that the